Joanne E. Sheldon

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.

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.

Diversion of opioid pain medications at end-of-life.

Mr J is a 67-year-old white male with a history of metastatic pancreatic cancer. His pain has been controlled with extended release oxycodone 40 mg twice a day, and oxycodone immediate release 10 mg every 4 hours as needed. Recently, his functional status declined and his daughter moved in to help care for him (he was previously living alone). The hospice nurses note that the patient’s pain is increased lately, and when they visit, the daughter seems ‘‘out of it’’. The patient’s pill count is low, indicating a shortfall of 10 extended release oxycodones and 20 immediate release tablets over the last 7 days. Mr J states his daughter gives him his medicine, and that his pain has been 6 to 7 on a scale of 1 to 10 for several days. When asked about the missing oxycodone tablets, Mr J becomes very defensive, stating his daughter would never take his medicine. The daughter also denies diversion, though she falls asleep twice during the interview. Mr J declines inpatient hospice to control his symptoms and to monitor his medication use, stating ‘‘you can take care of me here...I just need more medicine.’’ Medical Perspective

Sisters to the end: the rights of the mentally retarded to refuse treatment.

The ethics roundtable is a regular feature of the American Journal of Hospice & Palliative Medicine. If you have a case with interesting ethical features, please submit it to the journal by email to hospice@pnpco.com or by fax to 781-899-4900. Contributors will be credited in the journal. Cases will be edited for clarity, space, and to maintain the anonymity of the patients and staff involved.

Ethics roundtable. Providing care in an unacceptable environment.

M r Z is a pleasant 48-year-old man who works as an independent ‘‘handyman.’’ He lives alone and states he has little contact with his family. Recently, he was diagnosed with metastatic colorectal cancer and was treated with external beam radiation to a painful hip metastasis. He is currently taking immediate release oxydodone for pain, with good results. Mr Z’s oncologist recommended chemotherapy with continuous infusion 5-fluorouracil, which Mr Z agreed to because he would be able to continue working. When home health arrived to evaluate him for home-based chemotherapy, however, they found that the house was in filthy condition. They reported trash and human feces ‘‘everywhere.’’ There was no sanitary place to keep food inside the house, and there was no electricity or running water. Mr Z was drinking water from the creek. Home health care has refused to provide services for him given his living conditions, unless they will be changed. Mr Z refuses to go to a nursing home and refuses help from Adult Services. He now states that if he had known ‘‘treatment was going to be so much trouble, I never would have agreed to it.’’ If Mr Z responded to the chemotherapy, his prognosis was considered to be approximately 8 months. His oncologist wonders what the next course of action should be.

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.

Comfort Care Versus Euthanasia

M rs K is a 58-year-old female with a history of morbid obesity and Pickwickian syndrome. Over the last year, she has had severe dyspnea and has struggled to get from bed to bathroom. She stated multiple times over the last year that she ‘‘didn’t want to go on like this’’ and wished she would ‘‘just die.’’ Mrs K was transferred to the emergency department (ED) by emergency medical services (EMS) when her family found her unresponsive in bed. She had a pH of 7.15 and a PCO2 of 90 with an oxygen saturation of 70% on 100% O2 started in the ambulance. She was intubated in the ER at the family’s request. During the night, Mrs K became responsive as her arterial blood gases (ABGs) improved. With mechanical ventilation, her pH was 7.44 with a PCO2 of 35 and an O2 saturation of 100%. Mrs K began gesturing to the endotracheal tube and signaling her family that she wanted it removed. A palliative medicine consultation was requested. The palliative medicine consultant determined that Mrs K understood that extubation would likely be fatal and that she indeed wanted this. The family was in agreement and wanted her ‘‘to be made comfortable.’’ On intubation, Mrs K said ‘‘thank you, and don’t ever do that to me again.’’ She greeted her family and enjoyed a few moments with them. After an hour, she became unresponsive again and was transferred to inpatient hospice. The next day, Mrs K remained unresponsive, with some labored breathing. A morphine patientcontrolled analgesia (PCA) was initially titrated with good results. At 7 PM, the family told her nurse that they were upset that she was ‘‘lingering’’ and that she did not die immediately after extubation. Although the patient was unconscious, the family felt she was ‘‘suffering’’ and wanted her O2 discontinued stating ‘‘we just want to let her go.’’ Once the oxygen was stopped, the patient had increasingly labored respirations. The family demanded that ‘‘something be done’’ and the resident from the primary care service was paged. The resident assessed the situation and wrote ‘‘patient markedly dyspneic, family desperate for symptom relief’’ in the chart and gave 10 mg of intravenous (IV) morphine with some improvement in work of breathing. The resident then gave another 10 mg of IV morphine with significant improvement in work of breathing. Mrs K quietly expired 10 minutes later. The family was thankful to the hospital, physicians, and staff. The next morning, the clinical manager asked whether Mrs K had been euthanized by the resident. An ethics panel was convened.

A Suicidal Patient in the Burn Unit

AC is a 27-year-old radio personality, who was admitted to the trauma unit after sustaining multiple fractures and blunt trauma to the chest, head, and abdomen in a motor vehicle accident. He had been smoking marijuana and drinking alcohol while driving when he fell asleep, running his car into an overpass. He was resuscitated at the scene and required nasotracheal intubation due to massive facial trauma. He was diagnosed with a C6 spinal fracture and was paralyzed below the waist. He attempted to wave off the surgeons in the emergency department and became combative when they attempted to treat him. He was declared incompetent and was sedated. He underwent several surgeries that night (including spinal fusion) and grudgingly consented to further treatment including skin grafts to the face in subsequent weeks. He survived treatment but became increasingly angry and despondent in the intensive care unit (ICU). He now argues that he should have been allowed to die on the night of the accident and that he attempted to refuse treatment in the emergency department. He states he does not (and would never) want to live with the degree of impairment he has sustained. To make matters worse, his vocal cords were damaged during the incident and his voice is no longer broadcast quality. AC threatens to commit suicide as soon as he is released from the hospital. The palliative medicine team is consulted.

Cruel and unusual code blue

could be held the following morning. The patient thus remained “full code” status. Today the patient is noted to have declining oxygen saturations and becomes hypotensive and unresponsive. Multiple attempts to reach her daughter are unsuccessful. Her nurse comments, “we need to either make her a no-code or move her to the ICU now. She’s going to code soon.” Her oncologist, nephrologist, and palliative medicine consultant agree that coding the patient would be, in the oncologist’s words, “cruel and unusual.” There is no time for an ethics consult. What should the team do?

Dueling interests: when surrogates collide.

To have a quality discussion in an ethics committee, more information is needed. We would want to know what previous medical problems she has or is experiencing. How has she been treated? How compliant is she with physician orders? What medication is she taking? What is her prognosis? What have been her relationships with her son and daughter? I also wonder what the relationship between the son and daughter has been. Do they usually disagree on important issues? It would also be helpful to identify and contact the physician who has cared for Ms L in the past, who might have an idea of what her thoughts were about end of life. Many words are sprinkled throughout this case, and I wonder how the sister and brother define and understand them. These would include DNR, comfort measures only, and full code. Does each of them understand the total meaning and how the application of each could affect their mother’s life or death? These questions require time for answers. A family meeting needs to be called with the physician, nurse, social worker, and anyone else who is involved in Ms L’s plan of care. During this session, the collaboration of the hospice staff should show support of each other as well as an appreciation for both the patient and the family. One would hope that part of their time together would include time to discuss the benefit versus burden of care that is being provided to their mother. Another area of discussion could be the relationship between sister and brother. Does this impact their decision in any way? Also, what has been their experience with death and the dying process? Are either of them feeling guilty or afraid? And, if so, why? There is no mention of religion in anyone’s life. So, I wonder if this might impact the decisions of either of the family’s children. Are there any cultural or spiritual traditions that might impact their decisions? Case Study: When Surrogates Collide