Coerced Medical Care: Is That Ethical?

Coerced medical care means that the patient will or is having or has received medical care not by their own autonomous decision but because the legal system has decided, after consultation with the patient's doctors that such care must occur.  Dr. Julie Cantor discusses the matter in a New England Journal of Medicine free full text article in the June14 2012  issue.

The first paragraph sets an example:

Samantha Burton was 25 weeks pregnant when her membranes ruptured. Burton's obstetrician admitted her to Tallahassee Memorial Hospital (TMH) and prescribed continuous inpatient bed rest. But with two young children and a job to consider, Burton found the prospect of a 3-month hospital stay overwhelming. She decided to go home. When she tried to leave, authorities barred her exit.

Go and read the Journal article and then return with you own views regarding such legislative, medical or legal actions taken upon patients.

Under what circumstance do you find that a law or court decision should override any voluntary medical decision by the patient? Is it ethical to deny a competent patient's informed and autonomous decision?  Is there a difference if the issue is regarding a communicable disease versus a pregnancy? ..Maurice.

Munchausen by Internet: Should We Believe Everything Our Visitors Tell Us Here?

On many of the threads on my blog, my visitors describe their own medical conditions and their experiences with the disease and with their healthcare providers. Probably more common, of course, are visitors to online chat or websites which deal with and provide support for specific illnesses and encourage discussion.  The general personal anonymity of the postings encourage free discussion of one's described illness and experience.  Often there may be a outpouring of sympathy by the other participants to the site. Unfortunately, it has been discovered and documented that these personal narratives of one's illness are fabricated by the writer for their own psychological reasons. And this condition has been named: "Munchhausen by Internet". An excellent description  of this behavior is described in the Wikipedia presentation "Munchhausen by Internet" from which the following portions are copied below. Go to the Wikipedia link and read the entire article including noting the resources. What do you see as the ethical implications of such behavior on the internet and the effect of such made-up life experiences might have on large numbers of innocent but ill visitors struggling with their own concerns? ..Maurice.

Münchausen by Internet is a pattern of behavior in which Internet users seek attention by feigning illnesses in online venues such as chat rooms, message boards, and Internet Relay Chat(IRC). It has been described in medical literature as a manifestation of factitious disorder or factitious disorder by proxy.^[1] Reports of users who deceive Internet forum participants by portraying themselves as gravely ill or as victims of violence first appeared in the 1990s due to the relative newness of Internet communications. The pattern was identified in 1998 by psychiatrist Marc Feldman, who created the term "Münchausen by Internet" in 2000. It is not included in the fourth revision of the Diagnostic and Statistical Manual of Mental Disorders(DSM-IV-TR).
The development of factitious disorders in online venues is made easier by the availability of medical literature on the Internet, the anonymous and malleable nature of online identities, and the existence of communication forums established for the sole purpose of giving support to members facing significant health or psychological problems. Several high-profile cases have demonstrated behavior patterns which are common among those who pose as gravely ill, victims of violence, or whose deaths are announced to online forums. The virtual communities that were created to give support, as well as general non-medical communities, often express genuine sympathy and grief for the purported victims. When fabrications are suspected or confirmed, the ensuing discussion can create schisms in online communities, destroying some and altering the trusting nature of individual members in others.
The term "Münchausen by Internet" was first used in an article published in the Southern Medical Journal written by Marc Feldman in 2000. Feldman, a clinical professor of psychiatry at theUniversity of Alabama at Birmingham, gave a name to the phenomenon in 2000, but he co-authored an article on the topic two years earlier in the Western Journal of Medicine, using the description "virtual factitious disorder".^[2] Factitious disorders are described in the Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR (DSM) as psychological disorders involving the production of non-existent physical or psychological ailments to earn sympathy. These illnesses are feigned not for monetary gain or to avoid inconvenient situations, but to attract compassion or to control others.^[3] Chronic manifestation of factitious disorder is often called Münchausen syndrome, after a book about the exaggerated accounts of the adventures of Baron Münchhausen, a German cavalry officer in the Russian Army, that was written by Rudolf Erich Raspe.^[4] When another person's symptoms are caused, such as a child or an elderly parent's, it is called factitious disorder by proxy, or Münchausen syndrome by proxy.^[5]
Feldman noted that the advent of online support groups, combined with access to vast stores of medical information, were being abused by individuals seeking to gain sympathy by relating a series of harrowing medical or psychological problems that defy comprehension.^[1] Communication forums specializing in medical or psychological recovery were established to give lay users support in navigating often confusing and frustrating medical processes and bureaucracy. Communities often formed on those forums, with the goal of sharing information to help other members. Medical websites also became common, giving lay users access to literature in a way that was accessible to those without specific medical training. As Internet communication grew in popularity, users began to forgo the doctors and hospitals often consulted for medical advice. Frequenting virtual communities that have experience with a medical problem, Feldman notes, is easier than going through the physical pain or illness that would be necessary before visiting a doctor to get the attention sought. By pretending to be gravely ill, Internet users can gain sympathy from a group whose sole reason for existence is support. Health care professionals, with their limited time, greater medical knowledge, and tendency to be more skeptical in their diagnoses, may be less likely to provide that support.^[1][6][7]People who demonstrate factitious disorders often claim to have physical ailments or be recovering from the consequences of stalking, victimization, harassment, and sexual abuse. Several behaviors present themselves to suggest factors beyond genuine problems. After studying 21 cases of deception, Feldman listed the following common behavior patterns in people who exhibited Münchausen by Internet:

• Medical literature from websites or textbooks is often duplicated or discussed in great detail.

• The length and severity of purported physical ailments conflicts with user behavior. Feldman uses the example of someone posting in considerable detail about being in septic shock, when such a possibility is extremely unlikely.

• Symptoms of ailments may be exaggerated as they correspond to a user's misunderstanding of the nature of an illness.

• Grave situations and increasingly critical prognoses are interspersed with "miraculous" recoveries.

• A user's posts eventually reveal contradictory information or claims that are implausible: for example, other users of a forum may find that a user has been divulging contradictory information about occurrence or length of hospital visits.

• When attention and sympathy decreases to focus on other members of the group, a user may announce that other dire events have transpired, including the illness or death of a close family member.

• When faced with insufficient expressions of attention or sympathy, a forum member claims this as a cause that symptoms worsen or do not improve.

• A user resists contact beyond the Internet, by telephone or personal visit, often claiming bizarre reasons for not being able to accept such contact.

• Further emergencies are described with inappropriate happiness, designed to garner immediate reactions.

• Other forum members post on behalf of a user, exhibiting identical writing styles, spelling errors, and language idiosyncrasies, suggesting that the user has created fictitious identities to move the conversation in their direction.^[1]

"Difficult Patient": What is your definition and ARE YOU ONE?

There are a series of articles in the current May 2012 issue of the American Journal of Bioethics which offers perhaps a redefinition of the expression often used in medical practice "the difficult patient". In addition, the discussion also involves how to handle such characterized patients including mediation of the doctor-patient relationship, perhaps formally with the utilization of a clinical ethicist.  The journal articles were all written by  thoughtful professional ethics scholars and although they all, most likely have been or will be patients, I wanted, with this thread, to read how my visitors as patients and "scholars" in other ways, would define or redefine the "difficult patient" in you own terms and then tell us whether you think you are one!  ..Maurice.

Graphic: "Difficult Patient" retrieved from Google Images.

Do You Want to be Autopsied?

Routine hospital autopsies, performed by pathologists, in the past was a not an uncommon result after a patent died in the hospital.  Families were routinely asked for permission for the autopsy.  In recent years, routine autopsies far less frequent.  According to a recent report by the CDC (United State Center for Disease Control) written by  Donna L. Hoyert the key findings were as follows:

• The percentage of deaths for which an autopsy was performed declined more than 50 percent from 1972 through 2007, from 19.3 percent to 8.5 percent.
• External causes accounted for 9 of the 10 most frequently autopsied causes of death.
• The percentage autopsied declined with age after ages 15–24: from 60 percent at 15–24, to 11 percent at 55–64, to less than 5 percent at 65–74.
• In 1972, 79 percent of autopsies were performed for deaths due to disease conditions and 19 percent for deaths due to external causes. By 2007, the respective percentages were 46 percent and 50 percent.
• While the age distribution of deaths shifted to older ages from 1972 through 2007, autopsied deaths were increasingly concentrated in the age groups 1–34 and 35–64.

An autopsy, the medical examination of a deceased person, may confirm clinical findings, provide more complete information to describe cause of death, or uncover conditions not recognized clinically prior to death (1). Two types are performed in the United States: a) hospital or clinical autopsies, which family or physicians request to clarify cause of death or assess care, and b) medicolegal autopsies, which legal officials order to further investigate the circumstances surrounding a death (2). The autopsy rate, or percentage of deaths that received this final assessment, was stable from the 1950s until the beginning of the 1970s, when the autopsy rate began to decrease (3). This report uses mortality data from the National Vital Statistics System (NVSS) over a 35-year period to examine changes in the autopsy rate and in the distribution of those autopsied by age and cause. Variation in autopsy patterns has implications for which deaths may have a more complete and conclusive cause-of-death determination.

Read the full study.  To answer the question, why are autopsies not as popular now as it had been in th past, George Lundberg, M.D. writing in KevinMD suggest the following from the view of each participant except, of course, the deceased patient:

1. Pathologists don’t like autopsies because they can be unpleasant, smelly, time-consuming, unappreciated, often not specifically paid for, and they take time away from other tasks viewed as more important, appreciated, pleasant, and lucrative.
2. Clinicians do not like autopsies because it is uncomfortable to face a family that has lost a loved one. The physician must confront a level of failure because of the death, a tarnishing of the doctor-as-god image. Autopsy surprises might lead to an unhappy family, quality assurance committee concerns, possible litigation, and even a report to the state medical board.
3. Hospital administrators do not like autopsies because they prefer not to dwell on unfavorable results of hospitalization. They claim difficulty finding the money to pay for them and can never make a profit from autopsies. They often have little medical or scientific background that would encourage curiosity and they tend to do mostly what licensing and accrediting agencies require; these remain strangely silent.
4. Third-party payers do not like autopsies because they are an expense, and are performed on people who are already dead.
5. Families of patients do not like autopsies because they are ill-informed about their value, afraid that it might cost them money, and some feel that the deceased person has already been through too much of an ordeal in dying.

The value of any professionally carried out autopsy might reveal not only some unexpected or unknown cause of death but also could provide the medical profession and future generations with knowledge of disease never previously described. In these days of modern technology from MRIs to genetic analysis, there is always room for the old fashioned but information-yielding autopsies. Permitting  an autopsy could be looked upon as a altruistic action for the future living even though, unfortunately, the patients themselves will no longer be benefited. 

So  the question for this thread: "Do you want to be autopsied?" And the answer is:____________. 

(You might also explain your answer.)  ..Maurice.


Graphic: From Wikimedia Commons: "The Anatomy Lesson of Dr. Nicolaes Tulp"  Rembrandt, 1632

Patient Modesty: Volume 49

I think the last two postings on Patient Modesty: Volume 48 set the problem of the current medical system followed by a explanation of why the problem is present.  Both and together I think, are worthy preface to begin Patient Modesty: Volume 49. ..Maurice.

From Anonymous:

As a woman, I've appalled with the way the general medical profession handles (or doesn't handle) patient modesty, and their seeming obsession with having access to the genital area. In the past I have been denied everything from allergy tests to antibiotics for ear infections due to my refusal to submit to a PAP smear. So be it, I now turn to alternative medicine for what I can, and suffer through the rest.
My 60-year-old husband never quite understood my views since he'd only gone for random physicals and never experienced anything untoward. However, he rcently underwent an outpatient surgery to have an ICD device placed in his shoulder, and now he understands. 
He was required to check in to the hospital 2 hours before his scheduled surgery time. A nurse came in and gave him a gown and told him to remove everything including his underwear. She wrote something on a chart and repeated "Now don't forget your underwear." Then she adjusted the bed and a third time said "Remember to take off your underwear." I could tell she was making him very uncomfortable with her repeated focus on his underwear, so I firmly told her to Back Off. I told her he was neither deaf nor mentally impared so I was certain that he understood her directions, and I asked her to leave. She left, but he was visibly shaking as he got changed. And then we sat there in that room for 2 hours, with literally nothing else happening beside a nurse coming in 1 time to take his blood pressure (which was higher than usual). Finally nerves got the better of him, and he slipped his pants back on so he could walk around the room a bit. Like she had radar, a nurse came in shortly after and berated him for not having all his clothes off. So he took off his pants again and laid in the bed for 2 more hours while nothing happened.
Finally a man came in to take him down to the pre-op room. My husband was allowed to go to the bathroom before being wheeled downstairs. And as he asked me, WHY did they insist on him being nude under a butt-revealing short gown for all that time? Could he not have just been told to change when he went to the bathroom? It seemed like nothing more than a tactic to upset him and make him submissive.
Once in the staging area, a nurse cleaned the shoulder area, inserted an antibiotic IV, and jokingly told him not to go anywhere. The she flipped up his sheet a little and joked "Not that you're dressed to make an escape anyway, right?" before she left the room. Wow, what a way to humiliate a frightened man and emphasize his vulnerability. My husband went a little nutters at that point, asking me to remove his IV and bring him his clothes so he could leave. I had to beg him to go ahead with the potentially lifesaving procedure.
Afterwards he was supposed to stay in recovery for an hour (where I wasnt allowed to be)before being returned to his room, but it didn't work out that way. I don't know what happened in recovery, but he came walking up to me in his gown and asked for his clothes. I gave them to him, he changed in a bathroom, and we left.
Now he says that when the battery on the ICD wears out, he won't go back to have it replaced. He says the thing can just "Sit in his chest doing nothing" because it "isn't worth it" to have to go through all that.
Nornally my husband is the apitome of a rational thinker, so obviously their techniques really upset him. I'm sure he wouldn't have made such a rash end decision if they hadn't insisted on making him lay around for 4 hours feeling humiliated with those 2 nurses making an issue of it, when there was no need for it. And they wonder why people don't go in for needed tests and procedures? What's wrong with our medical society?

And from BJTNT:

When you work for the demi-god, you are an angel and patients are mere mortals. This culture has evolved into the PCC syndrome - Power, Control, and Convenience for the medical operations employees. Assume this premise and see how much this describes what you observe in medical operations.
The unfortunate element of the PCC syndrome is that the employees can practive it with impunity. There is no management to crack down on them. The MO administrators are only concerned with implementing the medical committees and ownership policies. The supervisors are promoted employees with the PCC mindset. And MDs only want to "see patients". So, the kids get to run the candy store.
On the other hand, as POGO stated in the Walt Kelley cartoon of the same name "We have found the enemy and he is us." We expect [and I think rightly so] high standards from medical operations{MO} because our health and even our life can be at stake. But, to the MO employees it's just a job. It's just a job with some nice perks {PCC}.
BJT


Graphic: From Google Images and modified by me with Artrage and Picasa3.

NOTICE: AS OF TODAY AUGUST 15, 2012 "PATIENT MODESTY: VOLUME 49" WILL BE CLOSED FOR FURTHER COMMENTS. YOU CAN CONTINUE POSTING COMMENTS ON VOLUME 50

A Change of the Medical System to Patient-Centered Consumerism: Is that What You Want?

Here is what Donald M. Berwick, writing in Health Affairs May 2012 suggests a the way the medical system can really become "patient-centered" and not present only partial changes in that direction but, in my words, "not half cocked but going the whole way". So now look at this list of changes and see if this is how you would want your doctor, nurse, hospital and the whole system to behave.

(1) Hospitals would have no restrictions on visiting—no restrictions of place or time or person, except restrictions chosen by and under the control of each individual patient. (2) Patients would determine what food they eat and what clothes they wear in hospitals (to the extent that health status allows). (3) Patients and family members would participate in rounds. (4) Patients and families would participate in the design of health care processes and services. (5) Medical records would belong to patients. Clinicians, rather than patients, would need to have permission to gain access to them. (6) Shared decision-making technologies would be used universally. (7) Operating room schedules would conform to ideal queuing theory designs aimed at minimizing waiting time, rather than to the convenience of clinicians. (8) Patients physically capable of self-care would, in all situations, have the option to do it. 

This might be just the beginning of suggested changes just as sweeping as the ones that Berwick suggests.  Read the entire article and then return and tell us what changes would you as a patient and a consumer would additionally want to see? Also, do you have any criticism of the changes noted above or by my visitors? ..Maurice.

If You Were A Medical Student: How Would You Respond?

Think about being a 23 year old student who was in his or her first few weeks of medical school with the only experience in medicine as an occasional patient with a minor illness or having experienced the reactions to significant illness in the family. You are challenged in these early days of becoming a doctor to sit across from a real patient lying in a hospital bed and told to take a medical history with no immediate assistance by an instructor. When the history is completed, the instructor will discuss with you about your experience. You have already been instructed regarding the composition of the history though prior education of the details of how you should react to all situations which develop during the interview can never be complete. Therefore, when faced, at the time of the interview, with a decision of what to do or say next, what would be your response?  As a student, how would you handle the following three scenarios?  As the student's instructor, after the student tells you what happened, how would you support and further educate the student regarding the event?  By the way, as an instructor, I have been informed about each of these three scenarios later as brought to my attention by students looking for advice.  ..Maurice.

THREE SCENARIOS:

1. You are interviewing a 68 year old apparently competent woman patient with pneumonia and her 45 year old son is in the room who repeatedly interrupts your attempts to have his mother give the history herself by immediately responding with what he knows to each question. What would you do and what would you say?

2. You are interviewing a 33 year old red headed female flight attendant who is to have repeat right shoulder surgery by a different orthopedic surgeon because as she says the initial surgeon "botched the job". She says that she was left with more  pain and limitation of motion of the right shoulder after the first surgery. She tells you what she knows about the surgery and her subsequent symptoms and then asks you directly "What do you think about how my surgeon treated me?" What would you then say to her?

3. You are interviewing a 28 year old female 3rd year medical student from a medical school in another state. She is very sick with leukemia and appears very weak, pale with multiple bruise-lie spots on her skin and is short of breath with repeated spells of coughing, raising bloody sputum as she tries to move in bed. She doesn't seem to be able to cope with her illness now and is very restless and depressed.  She talks about her fear of dying and seems to be asking you, a first year medial student, to somehow give her some emotional support even though he had never met you before.  You, yourself, are very upset about what you see and know. There is a "lump" feeling in your throat and you are beginning to feel nervous and weepy with tears welling up in your eyes. What would you do at this point and what would you say?

Overcoming the Inevitable in Medicine: Doctors Simply Doing Their Best Under the Circumstances

There is the story of the two campers whose tent is about to be invaded by a hungry bear. Despite both knowing that a bear can outrun a human, when one camper noted that the other was putting on his running shoes and tightening the shoe laces, the camper asked the other "why are you doing that?" The other camper responded "I don't have to outrun the bear, I just have to outrun you!"

I think there are a lot of times in medicine when doctors are faced with the task of simply doing their best under the circumstances.  It is not that they are necessarily wholly incompetent, it is just that diseases, not the doctors, can have a way of controlling the outcome of the illness.  Physicians faced with such diseases in their patients such as cancers and other illnesses may rarely want to give up. They may decide to continue specific treatments to rid the disease, denying the obvious that the disease is overtaking the treatment.  Sometimes the patient or families encourage the physician in this regard. This is not at all an uncommon scenario presented to hospital ethics committees for consultation. 

There should be a time, however, when the doctor realizes and accepts the inevitable and begins approaches which are the best treatment and benefit for the patient under the circumstances. This may involve energetic palliative care, care to relieve suffering but treatment that no longer attempts to cure.  One cannot always think that doctors can outrun the inevitable but, like the camper, must find alternate ways to accomplish the best under the circumstances.   Any objection from my visitors?  ..Maurice.

Graphic: Hungry Bear from KRQE.com via Google Images.

IVF Ethics: Should an Embryo be Rejected Because It's Potentially "Sick"?

The more science provides folks techniques to manage infertility such as through invitro fertilization and then implantation and the more science also provides tools to determine before the embryo is implanted whether or not the embryo is "potentially sick" because it is carrying a serious genetic defect (preimplantation genetic diagnosis), society is faced with further ethical and legal dilemmas. Such a dilemma can be developed from the example above: should prospective parents who desire to have a child by undergoing invitro fertilization be required under law to first have their embryo diagnosed for a genetic defect and if a serious genetic defect is found, they be compelled to reject implantation? Could it be argued that such attempt at diagnosis and subsequent rejection be considered under law and ethics as in the potential child's "best interest"?  And, perhaps in the best interest of the future generations if this embryo was allowed to mature, be born and survive long enough to have its own children? On the other hand, is the general ethical and legal principle of parents "acting in the best interest of their child does not mean choosing the 'best child'"? The expression in quotes is the title of a rebuttal by L.S.Flicker in response to a view set by Malek and Daar discussed in the current April 2012 issue of  American Journal of Bioethics. But what is your thought on this subject?  ..Maurice.