Karrie A. Oertli

End-of-life care when the state is the guardian.

David N is a 40-year-old male with a history of congenital hydrocephalus and profound mental retardation. He has no family and has been under the care of the State Department of Human Services. He has been in the hospital a number of times and has chronic respiratory failure and is ventilator dependent. He is currently septic, completely unresponsive (which is chronic), and hypotensive on 2 pressor agents. He has massive stage IV decubiti on his sacrum, buttocks, back, and heels. His attending physician feels his condition is terminal. The State Department of Human Services case worker has informed the attending physician that the department cannot authorize a ‘‘do not resuscitate (DNR)’’ order on any patient who is a ‘‘ward of the state’’ and explains that this is department policy and is intended to prevent the appearance of ‘‘laissez-faire’’ care by the agency. The attending physician feels that putting this patient through a ‘‘code blue’’ would increase his suffering and would be unethical. A Palliative Medicine consult was requested.

Legal but not always allowed: "physician aid in dying".

GH is a 47-year-old native of Oregon with a 2-year history of amyotrophic lateral sclerosis (ALS). He was first diagnosed with dysarthria and progressed to profound weakness over several months. He currently has a gastrostomy tube for feeding and regularly uses an oscillating vest to improve clearance of secretions. When he became totally dependent on all activities of daily living, he moved into a church-sponsored local nursing home. His family is not able to care for him at home but visits him daily. Current symptoms include pseudobulbar crying, drooling, profound total body weakness, orthopnea, and back pain. His respiratory status has worsened over the last 2 months and his pulmonologist has suggested a tracheostomy and ventilator management is in his future. GH communicates with a computer screen that he manipulates with his right hand. On a recent visit with his palliative medicine specialist he expressed dismay over his worsening condition and asked whether the doctor would be willing to ‘‘help me to die.’’ A prolonged discussion with GH and his family regarding physician aid in dying followed; after the discussion GH was convinced that he wanted this kind of treatment. Although Oregon enacted the Death with Dignity Act in 1997 which allowed terminally ill patients to end their lives through the voluntary self-administration of lethal medications, both the health system the physician works for and the nursing home board forbid this activity by their providers. In addition, the health system argues, GH could not ‘‘self-administer’’ the medication and assisting in his death would not therefore be legal. GH views this as ‘‘discrimination’’ due to his physical disability. The palliative care physician calls for an ethics committee consult to determine whether a health system, however motivated, can prevent a doctor from performing a legal medical procedure and to address the discrimination complaint.

The Case for ‘‘Palliative Dialysis’’:

Mr K is a 65-year-old male with a history of diabetes mellitus and end-stage renal failure. He was started on hemodialysis 3 years ago and his course has been complicated by calciphylaxis, causing excruciatingly painful lesions throughout his lower extremities. His pain has been poorly controlled, despite a regimen that includes extended-release morphine, immediaterelease morphine, and low-dose gabapentin (100 mg/ day with 125 mg after each dialysis treatment). Over the last year, he developed congestive heart failure (CHF), which has been controlled with medication and dialysis. He hasa goodsupport system; his wife and daughter care for him with the help of sitters at home. Over the last3months,Mr Khas lostweight andhis performance status has declined; he is now bedbound and detests the ride to dialysis 3 times a week. He states he is ‘‘ready to die’’ and requests a hospice consult. He refuses hospice, however, because he was told he would have to stop dialysis to enter the hospice program. He is concerned that he would ‘‘fill up with fluid’’ and that stopping dialysis would increase his suffering. A palliative medicine consult was requested.

The principle of distributive justice.

Erik N is a morbidly obese male with a long history of Pickwickian syndrome. He has right heart failure due to cor pulmonale and is totally bedbound. His wife is an advertising executive and her company has insurance that offers family coverage, but Erik and his wife decided not to purchase coverage for him so that they could afford to send their daughter to private school. Last year, Erik and his wife divorced and he hired sitters to care for him at home. Unfortunately, he exhausted his funds and dismissed his sitters. He was found on the day of admission by a neighbor in a semicomatose state. He was immobile, in bed, without adequate hygiene and was taken by Emergency Medical Services to the nearest hospital. Erik has been stabilized, but it is obvious he cannot care for himself at home. He will require nursing home care that he cannot afford and lives in a state with strict Medicaid requirements; he currently does not qualify for state assistance. Given that Erik voluntarily decided not to purchase coverage for himself when he could have and cannot afford the health care he needs, the question arises: does society have an obligation to care for him? Discuss the concept of distributive justice.

Medical marijuana and organ transplantation: drug of abuse, or medical necessity?

ED is a 39-year-old. African American male with a history of primary sclerosing cholangitis (PSC) and is on the liver transplant list at a major state-funded university hospital. He has been battling PSC for years and developed other comorbid problems, including loss of appetite, chronic nausea, and vomiting, along with advanced cirrhosis of the liver. Primary sclerosing cholangitis is a chronic liver disease caused by progressive inflammation and scarring of the bile ducts of the liver. The inflammation impedes the flow of bile to the gut, ultimately leading to liver failure. Primary sclerosing cholangitis is felt to be an autoimmunity disease. However, the definitive treatment is liver transplantation. Due to chronic abdominal pain, nausea, vomiting, and loss of appetite, and since he lives in a state where it is legal, he obtained a prescription to use marijuana from his primary care provider (PCP). In addition, he uses oxycodone for pain also under prescription from his PCP. His liver score worsened over time, but eventually he moved up on the transplant waiting list and finally was called in for a pretranplantation physical examination. This testing included a urine drug screen, where he tested positive for opiates and cannabis. The transplant surgeons and the transplant team had no issues with his use of oxycodone. However, when he tested positive for marijuana, the transplant team rejected him, labeling him as ‘‘using drugs of abuse.’’ He immediately obtained an attorney and pursued an appeal. An ethics consult was requested by the primary team.

Aggressive Treatment at End of Life

DL is a 38-year-old female with metastatic cervical cancer. She was in her usual state of health when she noted pelvic pain. She was seen by her gynecologist and a pelvic mass was found. A subsequent biopsy showed adenocarcinoma of the cervix. Human pappiloma virus subtype 18 testing was positive. There were extrapelvic metastases on presentation. She had some response initially to paclitaxel and cisplatin but had severe mucositis and neutropenia. She was tried on gemcitabine as second-line therapy but was admitted for hypercalcemia and failure to thrive. In the hospital, her hypercalcemia was treated successfully with intravenous fluids and pamidronate. The patient was not eating well, with cachexia and asthenia; her pain was controlled with Patient Controlled Analgesia (PCA) hydromorphone at a relatively low dose. DL was drowsy but arousable and oriented when aroused in the hospital. She told her family that she did not want to pursue further treatment and the family concurred. The attending hospitalist consulted hospice for home care. The hospice consult was still pending the next day when a new hospitalist attending came on the case. She was concerned about a 38-year-old being admitted to hospice and consulted oncology. The oncologist recommended third-line salvage chemotherapy with vinorelbine, stating ‘‘there is a chance that this will prolong the patient’s life.’’ The patient and family decided to defer hospice admission. She had leukocytosis requiring admission on this regimen and died after an episode of sepsis and respiratory failure requiring intensive care unit (ICU) admission, intubation, and multiple pressor agents.

Life Support After Brain Death

SP is a 52-year-old male who had an out-of-hospital cardiac arrest 10 days ago. He was found by his wife unconscious on the floor after an unknown amount of time. She provided cardiopulmonary resuscitation for 15 minutes until emergency medical services arrived. The initial rhythm was fine ventricular fibrillation and a stable rhythm with pulse was obtained after 10 minutes of advanced cardiac life support. He was transported to the local tertiary care hospital and hypothermia was provided. After rewarming for 24 hours, SP had a Glasgow Coma Scale of 3 (totally unresponsive). Despite a prolonged discussion of prognosis in anoxic brain injury, the patient’s wife and children advocated aggressive treatment stating ‘‘we’re expecting a miracle to happen.’’ An electroencephalogram (EEG) done yesterday showed no significant brain activity. Today, the medical team performed an apnea test on SP, which showed a 20-mm Hg increase in PCO2, supporting a diagnosis of brain death. A follow-up radionuclide cerebral flow study confirmed the diagnosis of brain death. The palliative medicine team discussed the results of the brain death determination at length with the family, who threatened to sue the hospital if SP was taken off life support, arguing that people recover from comas and that removing him from life support would be ‘‘tantamount to murder.’’ Risk management recommended deferring any withdrawal of medical treatment. Multiple discussions with the family had the same result and an ethics consult was requested.

When Surrogates Collide

RC is a 39-year-old obese female with a history of poorly controlled diabetes mellitus, type II. She was at home with her family when she experienced the sudden onset of right-sided hemiplegia and aphasia. She was transported to the hospital and thrombolytic therapy was initiated after a computed tomography (CT) scan showed no intracranial hemorrhage. She was diagnosed with a brain stem stroke and developed hydrocephalus. Despite maximal therapy, RC lapsed into a coma and ventilator management was required. Glasgow coma scale is currently 3 and has not changed for several days. RC had a boyfriend with whom she lived for the last 12 years; they had no children. The medical team feels that RC will not recover and will need a tracheostomy and feeding tube placed if the family wants to pursue aggressive management. Although RC’s boyfriend feels that RC would not want her life prolonged under these circumstances, RC’s father (whom she saw 2-3 times a year and has a good relationship) does not want to ‘‘just give up.’’ He asserts his right as RC’s father to make medical decisions. A conflict between the father and the boyfriend regarding future care and scope of treatment has resulted in an ethics consult. Who is the most appropriate surrogate?

Placebo: Medicine or Deception?:

GC is an 89-year-old female nursing home resident with carcinoma of the breast. She was first diagnosed at the age of 88 with a fungating lesion of the left breast, and opted for simple mastectomy without chemo or radiation. Metastatic workup was negative. Her performance status had declined and she was admitted to a local hospice program. GC believes her cancer has spread to her bones despite evidence to the contrary. During the admission process, the hospice nurse noted that GC was taking ‘‘Cebocap’’ for pain, which was written by her primary care provider. The nurse was unfamiliar with this medication and looking it up found that it contains ‘‘no active pharmaceuticals’’—that is, it is a placebo. The patient states ‘‘I can’t live without my pain medication,’’ stating that it is quite efficacious for her bone pain. In the hall, the patient’s daughters tell the nurse that they know their mother is taking a placebo and do not want it changed. Nor do they want their mother told that it is a placebo, as she is satisfied with it and depends on it psychologically to function. The hospice nurse is in a quandary; on one hand, the patient is comfortable and satisfied with her current regimen, while on the other hand her autonomy is threatened by what she perceives as the deception inherent in being prescribed a placebo. At the next interdisciplinary meeting, the nurse questions the ethics of placebo use. A vigorous discussion follows.

Death, dying, and statistics: quality measures versus quality of life.

JN is a 76-year-old meat salesman with a history of chronic obstructive pulmonary disease (COPD). Two weeks ago, he was admitted with new onset angina and subsequently underwent 4-vessel coronary artery bypass grafting (CABG). His course has been complicated by persistent respiratory failure and he is still intubated. In addition, he has renal failure (on dialysis), ventilator-associated pneumonia with septic shock, and remains comatose off all sedatives. Multiple consultants (pulmonary/critical care, nephrology, infectious disease, neurology) agree that he is terminal and should be made ‘‘no code blue’’ and transitioned to comfort care. Unfortunately, JN never executed a living will and was resistant to discussing end-of-life issues with his family. His family is distressed by the situation and will do whatever the cardiothoracic surgeon recommends. The computed tomography (CT) surgeon, who is one of the most ‘‘powerful’’ physicians in the hospital, is well known for never allowing do not resuscitate (DNR) status or transitioning to comfort care until the patient is at least 30 days postop. The general opinion among the staff is that he is motivated toward Medicare’s quality measure of 30-day mortality following CABG. The intensive care unit (ICU) nurses feel the patient is being kept alive because of this physician’s desire to maintain the top-level statistical performance and because other physicians are too intimidated to confront him. The critical care nursing supervisor calls for an ethics consult.