Matt Stolick

Overcoming the tendency to lie to dying patients.

A meaningful death can be fostered for a patient and his or her family with the aid of medical treatment, specifically through the alleviation of the patient’s suffering and pain. To recognize the dying process is a part of the art of medicine. Compassionate care for dying patients includes a move from a curative model of care to a palliative model of care in defining the primary goal. Hospice volunteer training and practice is sufficient palliative care training to develop these skills. The time has come for incorporating palliative care into the curriculum of medical school.

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.

Dying to meet you: Facing mortality and enabling patient styles

This paper is intended to emphasize the existence of prognostic uncertainty in providing survival estimates while also providing a method for caring to those who want to authentically help dying patients. Facing one’s own mortality helps one compassionately be there for dying patients. The transforming experience of death as essential to one’s self as human being, recognizing that one is living a story with death necessarily a part, promises to overcome the tendency to deny the existential meaning of death for dying patients. This tendency manifests itself through dishonesty about medicine’s limitations in creating prognoses, and specifically survival estimates, as well as in holding only a curative and not palliative goal of treatment. This tendency will be replaced by honest and compassionate actions with those in the process of dying. Representing this change is a focus on the patient as person, living a certain lifestyle, and defining himself by significant events and relationships in the past, present, and future. Death and dying become meaningful through incorporation into the story and style that is the patient. This meaning that is facilitated by caregivers and created by patients is central to achieving a “good death.”

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.

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.