BB

BB was a thirty-seven-year-old woman, in good health, employed and pursuing martial separation. Without warning, she suffered a brain stem stroke in November, resulting in the diagnosis of locked-in syndrome. She was left fully alert mentally, although quadriplegic and unable to speak; she preserved limited voluntary head movement, vertical gaze, blinking, and minimal voluntary movement of her left arm. Before her stroke, BB had a history of major depression with psychotic features, with on previous psychiatric hospitalization ten years earlier. Over the past decade, her symptoms were well controlled with weekly psychotherapy and medications. She was an effective and skilled professional in a competitive technical field. Ten weeks after her injury, BB was transferred to a rehabilitation facility for possible weaning from a ventilator and assistance with communication and mobility. Here she learned to communication with a computer system and received a modified power wheelchair. After some difficulty, she succeeded in breathing without the ventilator. However, her success disappointed her, to the surprise of the staff. It was then that the medical team learned of BB’s wish to die.  BB told a psychotherapist that she was suffering, which was primarily psychological rather than physical. She did not believe that this could ever accept life with her extreme physical limitations. BB’s medical team encouraged her to reconsider, saying many who suffer catastrophic injury have suicidal ideas year only, but after a year or two often regain their desire to live.  BB initially promised to postpone the discussion for 6 months, but after three weeks she changed her mind and said she wanted to die by stopping all nutrition, hydration, and medications, except for morphine to control her pain. BB manifested significant fluctuations of mood since admission, but a psychologist noted that she did not appear to have depression or a formal thought disorder.

            BB’s attending physician felt he could not continue to act as her doctor if she wanted to terminate food and fluid. The physician described to BB his idea of the suffering she would endure as she died of starvation and dehydration. He would not offer her pain medication, for to do so, in his opinion, would hasten her death, in violation of his ethical and personal beliefs. The physician believed BB’s request was more akin to assisted suicide. BB is not a candidate for local hospices as her imminent death is her own choice. BB’s disability makes the option of dying at home and impossibility, as she would need significant assistance to manage pain, possible seizures and routine care.

Brad and Dr. Robinson

Brad is a seventeen-year-old male with advanced cystic fibrosis (CF). Due to the present condition of his lungs, Brad has been given about three months to live. Brad comes into the ER with his girlfriend Jenny. Brad is unable to breathe. Dr. Robinson ascertains Brad’s age, after Jenny unwillingly gives it up, and intubates him. After Brad is intubated, his mother is located and called. When Brad’s mother Janice arrives, she informs Dr. Robinson that Brad has been living with Jenny in an apartment recently. Janice and Brad have recently been in a fight because of Brad’s decision to run away and live with Jenny (and not her). Dr. Robinson pulls Brad’s mother aside and tells her that there is a good chance that Brad will not wake up. His brain was without oxygen for an extended period of time and there is a good chance that he will not recover. Also, the amount of time on the ventilator did nothing to improve Brad’s condition and nothing can be done further to improve it. Dr. Robinson asks Brad’s mother about a DNR order and about her son’s wishes at the end of his life. Because of Brad’s adamancy about not being intubated when he originally arrived in the ER, Dr. Robinson is concerned about going against Brad’s wishes. Jenny also returns to the hospital with a non-statutory advanced directive stating that Brad did not wish for any heroic measures and under no circumstances did he want to be put on a ventilator unless it would improve his condition. Janice says she is not ready to lose him and says to intubate him again if necessary. Dr. Robinson looks at the advanced directive that Jenny brought in. Although this is a non-statutory advanced directive, and thus has no legal authority, Brad is extremely clear with his words. Brad wrote that he has watched numerous friends with CF die both on ventilators and on by choking to death on their own saliva and he never wanted to be in that situation. He never wanted to be on a ventilator and he wanted to spend the last days of his life with Jenny. He also wrote that his mother could not understand his feelings because she was blinded by her love for him and her fear of losing her only son. Dr. Robinson is concerned about doing what is best for Brad. Brad has a 2% chance of waking up to even a semiconscious state according to the neurologist’s assessment. He will continue to deteriorate on the ventilator and he will require ANH and a central line infusing his body with medication to control his pain. Taking into consideration the wishes of Janice, Brad’s legal guardian, and the advanced directive Brad wrote prior to his hospitalization, how should Dr. Robinson proceed?

--Written by Kate Sulkowski

Deborah

Deborah is a sixty-eight-year-old patient with advanced dementia.  Her appetite has slowly decreased over the past two months, and had a particularly low appetite the past five days.  The care team at the nursing home has offered the option of a percutaneous endoscopic gastronomy (PEG tube) to help provide nutrients she is not getting from oral intake.  Dr. Johnson explains that the benefits are limited in this case with dementia.  He explains that the patients often try to pull out their tubes in their diminished conscious state.  Dr. Johnson leaves the decision up to her children, Robert and Ann, along with her sister Betty.  Robert and Ann agree that the feeding tube should not be placed, stating that their mother is gone, she is no longer the tough woman they know to be their mommy.  Robert states that it would be best to simply let nature take its course, if she is meant to die.  Betty is outraged at their decision.  She yells how can you let your mommy starve to death, she is a fighter would not want to die.  Betty argues that Deborah is a devout Catholic, and that her sister would have wanted the feeding tube, because she believed all life was precious.  No one can argue against Deborah’s belief that she valued all forms of life, which was clearly indicated by her strong stance of supporting pro-life movements.  However, her children still believe that the feeding tube should not be placed, because they believe their mother would be harmed more than she would benefit from the feeding tube.

            Before Deborah entered the nursing home, her children lived several hundred miles away and only got to see their mother several times a year, during holidays and birthdays.  During these times, Deborah refused to discuss her opinions about the early signs of dementia, and her health, stating she did not want to ruin the fun memories, and dampen the event.  However, Deborah and Betty have always been particularly close.  The two of them went to mass twice a week for the past ten years leading up to Deborah’s placement into the nursing home.  The past three years, while Deborah has been in the nursing home, Betty still made it a priority to visit her sister several times a week, especially on Thursday nights for bingo.  Betty also has seen how much Deborah has enjoyed the programs the nursing home puts on during the week, along with spending time with her friends at the nursing home.  Should Dr. Johnson place the feeding tube?

--Written by Amanda Zinger

Neil

-->

Neil was first diagnosed with acute lymphoblastic leukemia at age 3. After induction chemotherapy failed to produce a remission, his family spent the next 6 months traveling around the country trying to find the best doctors and latest chemotherapy options. When they finally decided to seek treatment for Neil at a major children’s hospital hundreds of miles from their rural home, Neil and his mother moved to this city, where he spent the next 3-1/2 years in and out of eventually successful chemotherapy and a bone marrow transplant.

Years later, Neil revealed that most of his early memories involved the staff or patients of the children’s hospital. He certainly remembered good experiences, like the ceremonial head-shaving parties, the local ballet company’s recitals in the hospital, and his close friendships with other patients. But the reality was that Neil had lost many of those friends during his hospital stay, and he had many painful memories, too—the endless nights of nausea and pain, his mother’s constant anxiety about his recovery, and the unexpectedly difficult transition back to “civilian living,” catching up in school and learning to share belongings and his parents’ time with his siblings.

Neil succeeded in putting those painful memories behind him and living the life of an average kid in a small town. He’d developed an enthusiasm for football in long conversations with a football-loving nurse, and he threw himself into playing. However, when he was 14 years old, he began to notice increasing fatigue during practice and games. He didn’t mention it to his mother. During his annual physical, it was noted that he had lost 15 pounds and, when questioned, he revealed his other symptoms. His mother, inconsolable, prepared for another trip to Children’s Hospital.

There, Andrea, a third-year medical student, was assigned to Neil’s case. She, too, shared Neil’s enthusiasm for football, and they developed a rapport. But when Neil began asking Andrea about his diagnosis, she didn’t know how to respond.

Neil’s ALL had, in fact, returned. Because he had relapsed after transplant, only participation in a Phase I trial designed to measure toxicity and maximum dosages of new chemotherapy agents was offered as an option. But his mother had specifically asked the treatment team not to discuss Neil’s diagnosis with him, believing that he couldn’t cope with the news or appreciate its implications.

Meanwhile, Neil confided in Andrea that he would rather die than endure another course of chemotherapy, saying, “It was horrible. I can’t do it again. I just want to go home, but I’m scared my mom and doctors will hate me.”

*http://virtualmentor.ama-assn.org/2010/07/ccas1-1007.html

Jessica

-->

Jessica is a 2 ½ year old girl who was evaluated at 7 months of age for failure to thrive and enlargement of her liver and spleen.  She was found to have Gaucher’s disease, a genetic (recessive) lipid storage disease, the manifestations of which are due to the absence of an enzyme.  She was seen in consultation at a Pediatric Research Center.  It was not known which of three types of this disease she has.  She was begun 19 months ago on a 6-month trial of a replacement enzyme, which is approved for and effective in preventing the manifestations of the disease in two of the three types of Gaucher’s disease.  The family was unable to return to the Research Center for the 6-month follow-up visit.  The treatment has been continued, and, at her parents’ urging, her dosage has been increased to higher than normal.  She has had frequent long hospital admissions (infections and seizures) and she has developed problems suggestive of progressive disease (including respiratory failure; she has been on a ventilator at home for several months) strongly suggesting to her physicians that she has the more severe type of this disease that does not benefit from enzyme replacement. 

On the other hand, her liver and spleen have decreased in size, she has survived longer than the average for patients with the more severe type (typically, death before age two), her parents point out that she has grown some, and they are convinced that she shows signs of neurologic development while at home.  However, during her frequent hospitalizations, she has shown minimal awareness; at best she smiles, responds to her parents, and follows simple commands.  She is currently at home and receives total parental nutrition, home mechanical ventilation, a morphine drip (for bone pain) and the intravenous enzyme every 14 days.

Jessica’s overall therapy is somewhat expensive, but her parents are easily able to afford it.  Both Dr. Burgess, Jessica’s primary pediatrician, and the research consultant believe the enzyme is no longer medically indicated.  In addition, Dr. Burgess is concerned that progressive disease and invasive treatments are causing her sufficient suffering that continued treatment might be inappropriate if it is merely postponing her inevitable death.

Jessica’s parents are her caregivers at home, and they have declined assistance from home nursing.  They have no other children.  Her mother no longer works outside the home so is able to be home full time, and her father has reduced his work as an accountant to part time in order to help.   Friends from their church are supportive and help the family in many ways.  You are the physician on the case, what do you do?

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

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

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.

-->

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