Gerald M. Morris

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.

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.

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.

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.

Continuation of feeding tube.

Ms P is a 45-year-old woman with a history of persistent coma since an automobile accident 8 years ago. She was admitted to a residential hospice house after prolonged attempts at rehabilitation were unsuccessful. During the original hospitalization, a feeding tube was placed. A recent electroencephalogram (EEG) showed diffuse brain-wave slowing, consistent with her previous studies. Ms P is unresponsive and has been since the original injury. Her husband states he cannot bear the thought of losing her and has consistently requested that the feeding tube be continued. Her parents, on the other hand, argue that she never wanted to be kept alive artificially and that the husband is only concerned about an insurance cash benefit that continues as long as Ms P is alive. They have threatened to take legal action if the feeding tube is not removed. Ms P never executed an advance directive. 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.