Chloe Erikson

Chloe Erikson is a 22-year-old woman who has been struggling with anorexia since the age of 16. After losing both of her parents in a car accident at that age, Chloe began to suffer from depression and an eating disorder. Although she has been receiving psychological treatment for almost six years, she has not been able to lead a normal life. Despite the fact that eating disorder treatment programs isolated Chole from every day life, they did not succeed in treating her mental illness; each time she is released from treatment, her weight drops precipitously and she must be re-committed within a few months. Chloe hates being in treatment, but she can’t control her disease sufficiently to stay healthy and independent. When she is not in an in-patient eating disorder treatment facility, she lives with her sister Heather Moriarty and Heather’s husband, John, who love Chloe and are fortunately able to support her financially.

            Following release from her last in-patient stay, Chloe decided she wanted to obtain an advance directive and healthcare proxy stating that the next time her weight dropped to a dangerous level, she did not want to be sent to a hospital ICU by ambulance if she collapsed. Although when her weight reaches a life-threatening low, Chloe is vulnerable to collapse and fatal heart attack caused by electrolyte imbalance, she has decided that dying as a result of such an episode would be preferable to her than returning to in-patient treatment. It’s not that Chloe has become suicidal—if there were a way for her to maintain a healthy weight without being committed she would do so, but her disease is uncontrollable, and in her view, returning to in-patient therapy that never seems to work is no longer and acceptable option.

            Chloe’s requires has greatly upset her care team and her family. Her sister is adamant that she not be allowed to obtain the directive she wants and won’t agree to Chloe’s wishes as her healthcare proxy because she can’t bear the idea of her sister dying at such a young age and in such a tragic and preventable way. Chloe’s internist, Dr. Shankar, is also opposed to the directive, because he feels that 22 is too early for a person to give up on life, and that anorexia is a mental disease that renders Chloe incompetent to make such an important medical decision for herself. However Chloe’s psychiatrist, Dr. Snyder, insists that despite her disease, Chloe is sufficiently competent to make her own treatment choices.

LJ

Pentecostal beliefs. Her family brought her, under protest, to a large urban medical center when they discovered she walked with great difficulty. On her left food was an erosive and festering black mass, diagnosed as malignant melanoma. LJ stated that five years earlier, she first noticed this lesion, she had assumed it was a cancer. She had carefully concealed the lesion from her family because she had no desire for, nor belief in, medical care. Specifically, LJ was certain that doctors would want to amputate her foot, and she would never agree to such a treatment. LJ’s doctors identified a host of other medical problems, including a significant blood clot in her leg, a resulting leg infection, and fever. LJ accepted hospitalization and initial treatment, including hydration and antibiotics. After pathology confirmed that the lesion on her foot was malignant melanoma, the doctors told LJ that the required emergent amputation of her left leg below the knee. Without amputation, she might soon die from either the infection or a pulmonary embolus formed by the blood clot in her left leg. Amputation would also halt the spread of her melanoma if it had not already metastasized. LJ, however, refused amputation vehemently for religious reasons. Not convinced of the severity of her condition, LJ began to refuse blood draws, antibiotics and other medications.

            LJ has a close and supportive family of three daughters and one son, all of whom are alarmed she is refusing medical care, but only one of her daughters believes that the physicians should not allow LJ to refuse care, saying the choice is akin to suicide, that it is ‘crazy,’ and that she might go to court to force her mother to accept amputation. The staff caring for LJ also object to her refusal of amputation and to her reasons for it. Physicians believe she will have a 50% chance of survival for 5 years if she accepts the surgery. LJ has grown increasingly irascible at the medical staff, refusing them to speak to her and threatening to throw food trays at them if they bring up the subject of amputation. One doctor referred to her refusal as a tragic ‘delusional belief in the healing power of Jesus.’ Another doctor believes that if she refused treatment, she should be immediately discharged for fear of a liability should she suffer a rapid deterioration as a result of nontreatment.

--By Tia Powell

Jean McGuire

 Jean McGuire is a seventy-one-year old profoundly mentally disabled woman with the mental age of a two year old. A lifelong resident of a state institution, she was hospitalized because of a mild fever that resisted standard treatment.  She has been in the hospital for nearly three weeks undergoing a battery of invasive and uncomfortable diagnostic procedures: two bone marrow biopises, a barium enema, and a fine needle lymph node bipsy had all been performed, and their results had been inconclusive. Ms. McGuire has been placed with a PEG tube because she had been losing weight.  After some of her worst experiences, Ms. McGuire had been seen whimpering and crying for days. She spends most of her time in the hospital curled up in a fetal position, with the blankets drawn over her head. Before her hospitalization Ms. McGuire was reported to be capable of enjoying the company of others and enjoyed the facility she resided in. The director of her facility said that she reacted with obvious displeasure during even routine medical examinations, often needing to be held by an assistant. Though the physicians are unsure of her exact diagnosis, they suspect she has high grade large-cell lymphoma. Treatment for this would include six to eight course of chemotherapy with its burdensome side-effects. With treatment, up to 70 percent of patients have measure improvement of symptoms, but only 30 percent can expect long-term remission. Ms. McGuire’s physicians and facility direct wonder whether the treatment will do more harm than good.

Richard Johnson

Richard Jacobson is a thirty six year old man. He is currently living in a homeless shelter because he lost his job about two years ago. He previously worked as a construction worker, however, when a piece of the machinery fell and his brain was left permanently damaged, he was let go. Ricky, as he likes to be called, is functioning at about a sixth grade level. He is brought into the ER by the police after he is found wandering around the park one evening in nothing but his underwear. Ricky is known to the ER as a frequent flyer. He is an uncontrolled diabetic and his blood sugar levels typically reach astronomical values before he winds up back in the ER.

This particular evening is a January night in Chicago where is has recently snowed fourteen inches of snow. When Ricky is brought into the ER, he is only wearing only underwear, a hat and a tattered pair of shoes. The shoes are ones that the hospital gave him only a week prior to this current admission. As he is admitted to the ER, the nurses begin working him up, hooking up IV’s, and beginning a drip to lower his glucose levels. As they begin to pull away at the shoes that are frozen to his feet, they notice the intense frostbite in his feet. After Ricky’s blood sugar is brought down to normal levels, he is assessed by the attending in the ER using the mini mental state examination to determine if Ricky is competent to make his own medical decisions. Ricky is able to complete the exam scoring a 27, well within the limit for cognitive competency. Upon further examination, the attending in the ER also decides to call a surgical consult because even after rewarming, Ricky’s toes do not all return to normal states and are looking progressively dead.

Dr. Jablonsky is the surgical attending on call that evening and after an examination of Ricky decides that he is in need of surgery to remove the dead toes. This surgery has been deemed time sensitive but not necessarily immediate because the longer the team wait to remove the dead toes, the greater the chance that the team will have to remove the entire foot because of death in the bone or the muscles of the foot. However, as Dr. Greene, a resident under Dr. Jablonsky, is talking with Ricky about the surgery, he notices that Ricky is adamant that he does not want to lose his toes. He says that because he is homeless he needs his toes. He can’t live without his toes. Dr. Greene explains that if they don’t remove the toes he will lose one if not both of his feet. This doesn’t seem to impact Ricky, he just states again that he will not go into surgery and allow them to remove his toes. Dr. Greene brings this concern to Dr. Jablonsky, whose only response, is “consent the man or he will lose a lot more than his toes.” Dr. Jablonsky goes and talks with Ricky and returns with a signed consent form. However, when Dr. Greene talks with Ricky, he is concerned that Ricky might have been bullied into signing the form by Dr. Jablonsky.

When Dr. Greene suggests involving Dr. Rowland, the psychiatrist, in order to assess Ricky’s ability to make his own medical decisions, Dr. Jablonsky refuses stating that “Rowland is not a competent professional; she works so slowly that Mr. Jacobson will need his leg amputated before she clears him for surgery.” He also states that because of the mini mental state examination he is clearly competent to make medical decisions. Upon further investigation however, Dr. Greene discovers that Dr. Rowland and Dr. Jablonsky once had an intimate relationship that recently ended badly and he has been avoiding her since the breakup. Dr. Greene is concerned that Ricky is not aware of the consequences of his decision and will soon sign out AMA and eventually lose his foot or his leg due to gangrene. As Dr. Greene, how do you proceed?

--Written by Kate  Sulkowski

Sarah and Dr. Papke

Sarah has been Dr. Papke’s best friend since they were in grade school.

Dr. Papke is an OB/GYN and today her best friend, Sarah, is coming in for a routine ultrasound at St. Elizabeth’s Catholic Hospital. Dr. Papke is excited to see Sarah, because she and her husband, Brian, have been trying to conceive for years now and it finally happened. Dr. Papke talks to Sarah during her ultrasound, but then becomes quiet when she sees the screen. Dr. Papke asks Sarah if she has had any pain in her lower back and/or pelvic area. Sarah, now a bit frightened that Dr. Papke is asking her this, responds by saying “yes, I have, but I thought that was normal?” Dr. Papke starts a pelvic exam. In doing so, Sarah winces at the tenderness of her uterus and fallopian tubes. Dr. Papke conducts a vaginal ultrasound, she finds no signs of the developing fetus in the uterus.   Sarah notices Dr. Papke’s concerned look on her face and asks if anything is wrong with her baby. Dr. Papke reveals to Sarah that she is having an ectopic pregnancy. Dr. Papke explains that this kind of pregnancy occurs when the fetus is developing outside of the womb. In ectopic pregnancy, the fetus cannot survive, and if Sarah were to go full term and deliver the baby, she has a less than 5% chance of survival after child birth. Sarah is a strict Catholic and doesn’t believe in abortion, and she classifies this as abortion. However, as the doctor you think that she should end the pregnancy now so she doesn’t hurt herself. Would you be willing to risk losing your best friend for a child who is medically already dead?

--Written by Elizabeth Puzniak

Lisa and Dr. Csolak

Just a week after Lisa turned 18, she was involved in a vehicle accident on her way home from school. The paramedics rushed to the scene and thought that there was internal bleeding so they took her to the nearest Emergency Room. She got into the ER and was immediately seen by Dr. Csolak. Her parents arrived a few minutes later and ran to go see her. Dr. Csolak quickly told the parents what had happened, and in front of Lisa, said that she needed surgery right away, thinking that her spleen had ruptured, but would need an MRI to confirm.  Lisa interjects and says that she will not undergo any surgery. Lisa does, though, consent to having an MRI. While at the MRI, Lisa’s parents approach Dr. Csolak and tell her that she has been going through some rough times since her close cousin, Robin, committed suicide. They think that this is Lisa’s way of letting the pain go, by dying of something that can be treated. Dr. Csolak asks Lisa’s parents if anything has changed with Lisa since the suicide. They tell Dr. Csolak that Lisa hasn’t been sleeping, but when she does she has nightmares; she seems uninterested in things that usually maker her excited, such as painting; she hasn’t been eating a lot; and she has been moping and never seems to smile anymore. They wholeheartedly believe that if Lisa was not undergoing grieving of a loved one, she would chose to have the surgery. Dr. Csolak knows that a quick surgery will heal Lisa and that the success rate is extremely high. Her primary obligation is to the patient, but should Dr. Csolak listen to Lisa considering she has her whole life in front of her or should she listen to the parents?

--Written by Elizabeth Puzniak

Mr. Silver

-->

Mr. Silver is a 39-year-old man with prostate cancer.  Although the disease is confined to his prostate, Dr. Binder knows that, in a patient this young, the cancer is virulent and should be treated aggressively.  For this reason, he strongly recommends that MR. Silver undergo a radical prostatectomy. Mr. Silver has heard about the potential side effects of the surgery including impotence and incontinence, and he insists that he prefers radiation.

            Dr. Bender has explained that the chances of a long-term cure are 30-40 percent better with the prostatectomy and that any resulting problems can be surgically corrected later.  Mr. Silver is adamant, however, saying “Unless you can tell me that the odds are overwhelming that I will not be impotent or incontinent, I’ll take my chances with radiation.”  His wife has told Dr. Binder privately, “I don’t care about the side effects and he’ll get used to whatever happens.  I just want him alive.  We could have many good years ahead of us if he has the surgery.  I’m confused about his decision; it seems so unlike him to take this kind of risk. I’m not sure he totally understands the repercussions of what he is saying.”  Dr. Bender is very uncomfortable with proceeding with radiation.  Dr. Bender wants to respect his patient’s autonomy, but wonders if Mr. Silver is being irrational.

*Post, Blustein, Dubler. (2007). Handbook for Health Care Ethics Committees. Baltimore: Johns Hopkins University Press. 

John

John, a 32 year-old lawyer, had worried for several years about developing Huntington's chorea, a neurological disorder that appears in a person's 30s or 40s, bringing rapid uncontrollable twitching and contractions and progressive, irreversible dementia. It leads to death in about 10 years.

John's mother died from this disease. Huntington's is autosomal dominant and afflicts 50% of an affected parent's offspring. John had indicated to many people that he would prefer to die rather than to live and die as his mother had. He was anxious, drank heavily, and had intermittent depression, for which he saw a psychiatrist. Nevertheless, he was a productive lawyer.

John first noticed facial twitching 3 months ago, and 2 neurologists independently confirmed a diagnosis of Huntington's. He explained his situation to his psychiatrist and requested help committing suicide. When the psychiatrist refused, John reassured him that he did not plan to attempt suicide any time soon. But when he went home, he ingested all his antidepressant medicine after pinning a note to his shirt to explain his actions and to refuse any medical assistance that might be offered. His wife, who did not yet know about his diagnosis, found him unconscious and rushed him to the emergency room without removing the note. What should the care team at the emergency room do?

*

-->http://depts.washington.edu/bioethx/tools/cecase.html

Janet M.

            Janet M., in her early twenties, is pregnant for the third time.  She has been an insulin-dependent diabetic since the age of 12 but has experienced no major complications of diabetes.

            Dr. Lambert has repeatedly advised her of the risks that uncontrolled diabetes poses to her fetus.  Congenital malformations are two to four times more common in infants of mothers whose diabetes is poorly controlled. Furthermore, uncontrolled diabetes can result in the birth of a premature, stillborn fetus. 

            Dr. Lambert admits her at 15 weeks gestation as an inpatient to treat her diabetes, but she discharges herself against his advice five days later before her diabetes has been satisfactorily controlled.  Once home, she ignores pleas from Dr. Lambert and other physicians to obtain chemstirps or a dextrometer for monitoring blood sugar.  In response, she tells them she ‘has no money’ or ‘forgot.’

            At 21 weeks gestation she is hospitalized for a threatened miscarriage but quickly announces her intention to leave.  Dr. L. decides that her behavior poses a clear risk to the well being of her fetus.  Unless she changes her mind, he says, he will seek a court order to keep her hospitalized. Is his response justified?

*

-->Crigger, Bette-Jane. Cases in Bioethics : Selections from the Hastings Center Report. 3rd ed. New York: St. Martin's Press, 1998.

Sara

Sara, a 22 year-old woman has been re-admitted for treatment of active tuberculosis. She emigrated with her family from Somalia approximately 18 months ago.

Three months ago, she came to the hospital because she was coughing up blood.  Work-up revealed pulmonary tuberculosis without evidence of spread outside the lungs.  The organism was not resistant to standard therapy.  She was not critically ill, had not lost weight, and was Human Immunodeficiency Virus negative.  Active disease in family members was excluded.  Her prognosis for cure was good.  In addition, her inpatient and outpatient treatment was to be provided without charge by a religious hospital that exercised a prominent mission to the indigent community.

Therapy was begun, but she frequently refused medication and occasionally said she wanted to die.  Her nurses suspected that she induced vomiting after taking her medication.  She refused treatment by injection.  Because of concern about compliance and contagion, the Health Department recommended inpatient, monitored anti-tuberculosis therapy for 6 weeks rather than discharge for outpatient treatment.

Multiple management conferences were held with translation services.  Her parents and siblings were included, as well as a Muslim cleric, but support could not be engendered for the prescribed treatment goals. The Somalis perceive tuberculosis as a death sentence and could not be convinced otherwise in spite of hearing repeatedly that in contrast to the dire prognosis of tuberculosis in Somalia, the treatment here would have a high likelihood of success.  She and her family were consistently resistant to the necessity of inpatient treatment and subsequent outpatient follow up.

She was diagnosed as depressed, but she also refused treatment for depression. Psychiatric, Palliative Care, Health Department, and Ethics committee consults were obtained. All the consultants were consistent in their exhortations for her to comply with therapy. She again refused injections and began to pull out intravenous lines. She completed the 6 week course, such as it was, had improvement in her symptoms and chest x- ray findings. She was sent home, presumably cured.   She did not return for scheduled ambulatory visits.

She is re-admitted now, three months later, with fever and intermittent mental confusion.   She has been found to have recurrent pulmonary disease plus tuberculosis inside her skull, both meningitis and a cerebellar abscess.  It was surmised by the Infectious Disease Consultant that there were substantial medication gaps in her hospital regimen during the last admission.  When lucid, she again refuses or expectorates her medications and pulls out her intravenous lines.  Her family supports her decision to refuse medication.  The attending physician has asked the ethics consultant to address the question: “Is it ethically permissible to accept this patient’s refusal of potentially life-saving treatment?"

*

-->http://cbhd.org/content/permissibility-accept-refusal-potentially-life-saving-treatment

Blake

 "I get that my cancer's back," said Blake, obviously frustrated and eager to leave Dr. Conrad's office. "So what's the plan? How tough is it going to be?" Dr. Conrad answered, "Well, it is a fairly aggressive treatment. I can't deny that. But you're 16 now and pretty strong. The side effects are different for everyone; they can range anywhere from mild to harsh. This therapy has worked for a lot of patients and I believe it can work for you. What do you think?"

Just then Blake's cell phone rang. "I'm stepping out for a second," he said to Dr. Conrad. "It's one of my best friends."

"Sure, go ahead." Dr. Conrad said and turned to Blake's parents for some corroboration. They had been over this ground before when Blake's initial chemo treatments had put his acute lymphoblastic leukemia into remission, giving him several years of normal life.

"I've been talking to him about the importance of starting treatment again," said Blake's father. "Maybe I didn't do a good enough job explaining the urgency of it. He says he wants to know what to expect before deciding."

Blake's mother also weighed in, "I think he should be the one to make this decision. He asked directly, what does this treatment entail? He doesn't like it when we hold out on him. He wants to know the truth—and he deserves to be given all of the information straight."

"This time treatment will consist of not only high doses of chemo but radiation, too. But I don't want to lay all that on him right now," said Dr. Conrad. "All I want is for him just to agree to begin the new round of treatments."


*http://virtualmentor.ama-assn.org/2008/08/pdf/ccas3-0808.pdf

Josh

Dr. Carpenter had taken care of 3-year-old Josh since he was born. One afternoon, Dr. Carpenter received a call from Josh’s parents, both of whom were successful professionals. Josh’s dad had just been diagnosed with Huntington’s disease, a degenerative, neurological disorder, and the parents wanted Josh to be tested for the disease. The genetic polymorphism for Huntington’s is autosomal dominant, so Josh had a 50-50 chance of inheriting the gene from his father, and, if he did, he would develop the disease if he lived to middle age.ment is available.

After offering her condolences to Josh’s parents, Dr. Carpenter expressed what she considered to be a consensus opinion on the matter: “At present, there is no prevention, treatment, or lifestyle change that has an effect on expression of the gene. For these reasons, pediatric and genetic medicine specialty societies advise against testing children. Josh will have plenty of time to decide whether he wants to be tested once he is an adult.”

“I disagree completely,” said Josh’s mom. “If Josh grows up knowing he has this condition, he will be much better prepared to deal with it as an adult. He’ll be forming his identity over the next 18 years. Assuming he has the disease, he won’t face the trauma of having his identity and life plan change all at once.”

“But you’ll be denying him the chance to make the decision as an adult,” replied Dr. Carpenter. “Maybe he will decide not to know.”

“Isn’t that what parents do?” said Josh’s dad. “They make decisions for their children. If we take your approach, Josh may be 25 when he discovers that he wishes he knew all along whether or not he has Huntington’s. But he won’t have that option because of our decision not to test him. The choice to do nothing is still a choice, Dr. Carpenter.”

*http://virtualmentor.ama-assn.org/2009/09/pdf/ccas2-0909.pdf

Mrs. Randall

Pauline Randall, a 65-year-old married woman with three adult children, has been suffering from amyotrophic lateral sclerosis (ALS) for several years.  Her neurological condition has deteriorated so that she can no longer control any voluntary muscles.  Confined to a bed in a nursing home in a small Midwestern American city and breathing with the aid of a respirator, she communicates through the electronic monitor that responds to eyelid blinks.  She can ‘write’ words and brief sentences in this way.

            Mrs. Randall understands that her condition cannot be treated and that it will inevitably lead to her death.  But she has been an active participant in her health care and has been determined to continue functioning as long as possible.

            Her physician, Dr. Samuels, believes that she is not receiving adequate nutrition and that the time has come to insert a nasogastric feeding tube.  When he proposes this procedure to her, she blinks quickly, ‘No more!’ He asks, ‘Do you understand you will die slowly of starvation if we do not insert this feeding tube?” “Yes,” she blinks, “No more.”

            When Mrs. Randall’s family, which has been close and supportive through her illness, learns of her opposition, they have divided opinions.  Her husband believes that her wishes should be respected, but two of their three children are convinced that her life should be prolonged.  The nursing staff believes that she should not be made to suffer any longer.

            There is no question that Mrs. Randall is legally competent, that is, that she understands the procedure being proposed and the consequences of refusal.  Should her refusal of the feeding tube be honored, even though it will lead to her death?

* http://ethics.iit.edu/EEL/Right%20to%20Die.pdf

R.L.

At 80, R.L. lives with his wife in a retirement community. He has always valued his independence, but recently he has been having trouble caring for himself. He is having difficulty walking and managing his medications for diabetes, heart disease, and kidney problems. His doctor diagnoses depression after noting that R.L. has lost interest in the things he used to enjoy. Lethargic and sleepless, R.L. has difficulty maintaining his weight and talks about killing himself with a loaded handgun. He agrees to try medication for the mood disorder. Two weeks later, before the effect of the medicine can be seen, R.L. is hospitalized for a heart attack. The heart is damaged so severely it can't pump enough blood to keep the kidneys working. Renal dialysis is necessary to keep R.L. alive, at least until it's clear whether the heart and kidneys will recover. This involves moving him three times a week to the dialysis unit, where needles are inserted into a large artery and a vein to connect him to a machine for three to four hours.

After the second treatment, R.L. demands that dialysis be stopped and asks to be allowed to die.

You are R.L.'s physician. What should you do?

Malcom

            Malcolm ("Mac"), age 64, is an architect who was found to have an incurable cancer of the esophagus 5 months ago. He came to the Emergency Department 35 days ago with shortness of breath and it was found that his tumor was compressing the large airways going into both lungs. He was emergently intubated, admitted to the ICU, and given ventilatory support which has now continued for more than a month. Vigorous treatment has failed to shrink the tumor, and the ICU physician and oncologist are both convinced that his condition cannot be improved. Efforts have been made to awaken him to discuss limitation of treatment, but he remains too confused to understand or to engage in meaningful conversation. Because of his unawareness and his very poor prognosis, his professional caregivers have said they believe continued ICU care is futile.

            His only son, Paul, and wife, Lindsey, have been very attentive and willing to consent to any therapy that has been suggested so far. When presented a few days ago with information about his terminal condition and imminent death, however, they were unwilling to consider or even discuss any limitation of treatment, insisting that he remain in the ICU, on ventilator support, on a “full code” status. They stated that their deep religious faith (Methodist) required them to do everything possible to preserve life, and they were counting on God to perform a miracle. They report that the patient was also a man of deep faith who would likewise insist on this approach.

Mac’s ICU nurse reports that he remains unresponsive and does not appear to be uncomfortable. She further reports overhearing a conversation between Paul and Lindsey about the need to get the patient’s signature on a document that would finalize a real estate venture that he and his son have developed. An attorney came to the ICU to obtain the patient’s signature a few days ago, but Mac was unable to understand or to sign the document.


*http://cbhd.org/content/continuing-futile-icu-support-relatives-insistence

Patient Ed

Dr. Goldstein looked with concern at the small man lying in the ICU bed. The nursing home had brought him to the hospital because of lung congestion. Dr. Goldstein glanced back at his notes: Ed, age 67, a white male with diabetes, high blood pressure, and poor vision. Somewhat mentally retarded. Dr. Goldstein knew from past experience that Ed functioned at about a 10-year-old level and tended to think very literally. Oh yes, and a hearing problem, thought Dr. Goldstein, seeing Ed’s hearing aid gleam under the room light. “Ed,” Dr. Goldstein said loudly. “Ed, you have no control over your esophagus. When you swallow, food and water are going into your lungs, which is making you sick. You have developed pneumonia from the infection. We can treat the pneumonia, but we need to put you on a ventilator and a feeding tube. We’d sedate you so that it wasn’t uncomfortable.”

Ed stared up at Dr. Goldstein, blinking several times. His right eye drifted off to look into the corner of the room, but his other eye was focused on Dr. Goldstein.

“Do I get an operation?” Ed asked. “OK, but I don’t want tubes, and please don’t cut off my big toe.”

Dr. Goldstein sighed. Ed was running a fever and his oxygen levels were low in his blood. It was hard to talk to Ed in the best of times, so Dr. Goldstein wasn’t completely sure that Ed had understood him now. He tried again, shouting more loudly. “Ed! You have pneumonia. We need to treat it. You are very sick. We need to put in a ventilator and a feeding tube. Once the pneumonia is cured, we may be able to remove the tubes.”

Ed shook his head, eyes rolling. “Go away! No tubes! No tubes!” Dr. Goldstein looked at Ed’s file. Seven years ago, Ed had checked himself into the local nursing home. When he entered the nursing home, and again three years ago, a patient advocate had helped him fill out an Advance Directive which stated Ed’s medical wishes. Ed had clearly indicated that he did not want a ventilator, a feeding tube, or drastic cardiopulmonary measures such as CPR.

Dr. Goldstein wanted to put Ed on a ventilator, but it was fairly clear Ed didn’t want one. However, without the feeding tube and ventilator Ed would certainly die, probably in a week or two. Dr. Goldstein checked again. Ed had also filled out a Durable Power of Attorney, in which he stated he wanted his younger brother Bert to make medical decisions for him in the event he was no longer able to do so for himself.

Dr. Goldstein got up and left the room. He was convinced that it was time to call Bert. It wasn’t clear to Dr. Goldstein that Ed really understood what was happening to him, and Dr. Goldstein had always felt that it was courteous to involve the entire family when possible. Dr. Goldstein called Bert and explained the entire situation.

Bert is a rather shy, 63-year-old man. Living quietly at home, Bert has Crohn’s Disease and some arterial damage, including fairly major blockages in the arteries feeding his kidneys. Bert has never married, and he doesn’t like to make decisions. Bert sat down, still holding the telephone, and sighed. Poor Ed! What should he do?

After a long pause he mumbled, “Can I think about it and let you know tomorrow?”

“No,” said Dr. Goldstein firmly. “Bert, Ed’s not doing well. He has bad pneumonia, but he may be able to get better if we give him treatment and put him on a ventilator for a while. As you know, Ed’s against being on a ventilator, but I don’t think he understands that this may only be temporary. I don’t think his infection is letting him think clearly on his own. As his representative, you can decide to put him on a ventilator, but you need to understand the risks and benefits.”

Bert hesitated. “Um. What are the risks?”

Dr. Goldstein was more comfortable answering this question. “Bert, he has pneumonia, complicated by an esophageal defect. If we don’t treat him aggressively, he will almost certainly die, probably in a few days. There is a risk that we may not be able to remove the ventilator and feeding tube after the pneumonia is treated. It depends on the condition of his esophagus.”

Bert squirmed. “OK,” he sighed. “How about if you put him on the ventilator tonight, and if I change my mind tomorrow, then you can remove it?”

“Absolutely not,” Dr. Goldstein roared. “That would be murder!”

Finally Bert agreed to drive into the hospital, see Ed, and make a decision. After he hung up, Bert decided to call his nephew Eric. Eric might know what to do.

Eric was not at home. Bert left a message: “Eric, this is Uncle Bert. Ed is in the hospital. He has pneumonia and they say he needs tubes put in. But I know he doesn’t want them. Well, I just thought you might want to know. Sorry you weren’t home.”

Later that evening, Eric played the phone message. He immediately called Bert, but Bert was gone. Eric drove to the hospital to find out what was happening. He didn’t find Bert, but he was directed to the ICU unit, where he met Dr. Goldstein. Eric shook hands with Dr. Goldstein. “I’m Eric,” he said. “I’m Ed’s nephew. Ed’s older sister is my mother. I know there are patient privacy laws you can’t break, but I’d appreciate any information you can give me. If there is anything I can do to tell my mother or help my uncles, I’d like to know about it.

Dr. Goldstein was relieved Eric had shown up. Eric seemed to be someone he could talk to who would understand the situation and help Bert realize that Ed should get treatment.

*

--> http://sciencecases.lib.buffalo.edu/cs/files/treating_ed.pdf

Mr. Thompson

As a second-year neurology resident, Dr. Johnson has been fascinated by the case of Mr. Thompson, a construction worker who was nailing shingles to a roof when his co-worker's gun slipped, lodging a nail deep into Mr. Thompson's frontal lobe. Although comatose at first, Mr. Thompson regained consciousness and function under Dr. Johnson's care. is as important as the decision he or she reaches.

Despite his physical improvements after this accident, everyone in Mr. Thompson's life agreed that he was "not himself." Previously a gregarious, sunny man, according to his family and friends, he had now become surly, withdrawn, and disinhibited. Before the accident Mr. Thompson loved having his friends and family around; now he threw everyone out of the room at the slightest provocation, all the while cursing and screaming. Happily married to his wife for 27 years, Mr. Thompson had three children and no prior history of medical or psychiatric disorders. After his accident, however, he disparaged and insulted his wife when she visited and refused to see his children. He had a living will in the chart in which his wife was named as his health care proxy. During his recovery from the accident she had made decisions for him.

When Mr. Thompson had made good progress in his physical recovery, the neurosurgery team brought up the topic of removing the nail lodged in his skull, presenting the risks and benefits of the surgery to Mrs. Thompson. Even though the operation would be tricky, the surgeons firmly believed that the benefits outweighed the risks. Mrs. Thompson opposed the surgery, but Mr. Thompson was adamant about going ahead with it.

Dutifully, Dr. Johnson assessed his patient's capacity. Mr. Thompson was alert and oriented to person, place, and time; he passed the cognitive exam with flying colors. He verbalized understanding of his situation, stated clearly his treatment options and the risks and benefits of his surgery. He appeared to meet all the clinical benchmarks for decision-making capacity, and he was adamant that he no longer wished for his wife to be his health care proxy.

Dr. Johnson asked his team what they thought. The junior resident said, "the guy has a traumatic brain injury. He's literally not himself—he's a different person. He's impaired. That's the bottom line."

"I disagree," the senior resident said. "He's clearly oriented and capable of abstract reasoning. Personality changes don't mean you can trample on his autonomy."

*http://virtualmentor.ama-assn.org/2008/03/pdf/ccas1-0803.pdf

Mrs. Burke

"Let's pause here," said Dr. Lawrence during morning rounds. "This is Mrs. Burke's room. She's a 78-year-old woman who came in for a knee replacement 4 months ago and was re-admitted a month later with fever, weakness, and Staph. aureus bacteremia. She continues to have bacteremia. We have done a complete work-up multiple times, but we've yet to find the source of her infection. She's been back to the OR twice on the recommendations of the infectious diseases consultants, but the orthopedic surgeons have stated this is not coming from her knee. Mrs. Burke has also had imaging of her spine and knee five times, an echo of her heart three times, and almost daily blood cultures. She has been on several antibiotics, all based on susceptibilities. Today we will have our fourth family meeting. Mrs. Burke's daughter is very expressive of her own wishes and requests, which lately do not seem to be correlating with her mother's, and we have found that regular family meetings help to keep everyone on the same page."infection

After he finished his report, Dr. Lawrence led the team into Mrs. Burke's room, and Mrs. Burke asked about the day's plan. "Are you going to poke and prod me again or will I finally get a little peace?" Dr. Lawrence replied that her anemia, a possible side effect from the antibiotics, was slightly worse and that Mrs. Burke had the option of waiting until tomorrow to recheck her blood counts or receive a blood transfusion that day in the hope of making her feel better.

Mrs. Burke replied, "Dr. Lawrence, I'm so tired of everything. I don't want the transfusion. I want to be left alone for a while. I really just want to go home."

Later that morning during the family meeting, Mrs. Cominsky—Mrs. Burke's daughter—said, "We want everything possible done to locate the source of my mother's infection so that we can eradicate it. If that means more labs, running more tests, getting more fluid samples, doing more MRIs and echoes, don't hold back! I want my mother to get well."

Dr. Lawrence looked at Mrs. Burke, who sat quietly by her daughter's side. "Is this what you want?" he asked.

"Of course that's what she wants!" Her daughter exclaimed. "She wants to get better!"

"Well, we had a discussion earlier today, and your mother indicated that she was not interested in undergoing more tests. She has been here for several months now, and, understandably, she is tired. Her preferences—and you can correct me if I misunderstood you, Mrs. Burke—are to hold off on further testing right now and to possibly...."

"My mother is sick! She is not clear-headed! Of course, she wants everything done!" interrupted Mrs. Cominsky.

Dr. Lawrence asked Mrs. Burke to state her preferences so that everyone knew what she wanted, but Mrs. Burke simply shrugged her shoulders and replied in a defeated tone, "My daughter takes care of me at home. She knows what's best."


*http://virtualmentor.ama-assn.org/2008/06/pdf/ccas1-0806.pdf

Dorthea

Dorthea is a 69-year-old woman who was well and active until about five years ago when she developed diabetes.  She was admitted to the hospital 18 months ago with recurrent fainting and was found to have an intermittent transient heart block.  She reluctantly consented to insertion of a permanent pacemaker. 

Three months ago her kidney function was found to be diminished to about 10% of normal, probably caused by her diabetes.  It was expected that she would soon require dialysis.  However, her kidney function has since improved so that dialysis will not likely be needed for some time.  She has since said she would refuse dialysis even if it were needed, and she has refused treatment of her profound anemia.  She did consent to a colonoscopy last month to see if she had cancer (malignant change was found in one small area, presumably cured).  She is now asking that her pacemaker be turned off so that she can die.

The ethics consultant met with the patient and two of her daughters.  Dorthea says she wants to die now because (a) she misses her husband who died three years ago after 45 years of marriage; they were very close, did everything together, and she says she can’t live without him; (b) she can’t stand to live in their home (memories), but refuses to move; and (c) she wants to “set her children free.”  She has resisted attempts by her three daughters who have encouraged treatment, including grief counseling, and have even offered for her to live with them.  She has guns in her home and knows how to use them, but she says she is unwilling to take her own life.  She is an inactive Methodist.  She says her only pleasure is having her children, grandchildren and great-grandchildren visit, but she feels her misery is also making them miserable.

The patient says she was told when the pacemaker was inserted that it could be shut off whenever she didn’t want it.  It is her impression that she will die quickly without it, however, her cardiologist expects this would not be the case.  Though she demonstrates no intrinsic rhythm when the rate of the pacer is turned down to 30 beats/minute on testing, most patients do develop some rhythm after several seconds of not beating at all.  Thus she might not die, but could suffer symptoms of congestive heart failure with an unknown outcome.  She says she is miserable, is not eating (though her weight is down only 5-10 pounds), and cannot care for herself or her home, but she doesn’t want treatment for her anemia or her grief.  When asked, she said she did not have the colonoscopy last month in order to protect her life.  The only reason she consented to the procedure was that she hoped it would show she had cancer that would end her life. 

Her daughters have run out of ideas for helping her, and are now supportive of her request.  They believe “she wants quality of life over quantity of life,” but they recognize that she is refusing treatment which could enhance her quality.  They realize she has not dealt with her grief, but are convinced that she never will.

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*http://cbhd.org/content/it-permissible-shut-pacemaker

Mr. Simmons

            Otis Simmons is a 58-year-old homeless man living on the streets. One day he walks barefoot in the bitter cold through the streets of Manhattan in order to reach Roosevelt Hospital. “I froze,” he later said.  “I sat in one place 15 hours.” After he was hospitalized, he developed gangrene in his badly frostbitten feet.  The doctors wanted to amputate the infected portions, noting that otherwise the condition could become ‘life-threatening.’ Simmons refused the treatment: “My two legs got to say on.  I won’t have the operation.  I got to cure my own self.”

            Soon after, despite objections from hospital physicians, a State Supreme Court justice ruled that Simmons was legally competent and had the right tot refuse the amputation.  Antibiotic treatment helped to stall the infection.  However, Simmons finally lost two toes on his left foot and part of his right foot.  The bill for his three-month hospitalization amounted to $29,000 and has been submitted to Medicaid.  A hospital spokesman has said, “We don’t know how much they will pay or when they will pay it.”

            Mr. Simmons returns to the hospital 1 year later with frost-bitten hands.  Again he refused an amputation.  What should the hospital do?


*True Story