James Hallenbeck

A Request for Nondisclosure: Don't Tell Mother

Mrs. X was a 75-year-old woman who was admitted to the hospital with abdominal pain and severe depression. Her work-up revealed metastatic pancreatic cancer. Given her functional and nutritional status, her prognosis was less than 3 months. The patient had two daughters who were adamant that no one should tell their mom she has cancer. They understood that treatment was unlikely to prolong her life and wanted to take her home with hospice. You are unsure what to do— you feel like the patient has a right to know and yet her family is adamant that you cannot tell her because it will “kill her.” Requests for nondisclosure, as reflected in the case, may cause clinicians considerable distress. Does not the patient have a right to know the truth? What about informed consent and patient autonomy? Am I being asked to hide the truth or lie? Although the topic of nondisclosure raises legitimate ethical questions, we believe these cases are too often conceptualized as dilemmas in which one party must win and the other must lose: either the family is overridden and the patient told her diagnosis, or the physician’s conscience is violated and the patient is not told. A large literature lays out the arguments for and against disclosure in these cases. We think, however, there is a third way that often allows satisfaction of the patient, the family, and the physician’s concerns. This method depends on an understanding of the cultural factors that underlie the family and physician’s views and skillful use of negotiation techniques. In this article, we briefly review the literature on nondisclosure and provide some suggestions for handling requests similar to that posed in the case. Historically, patient nondisclosure regarding serious, life-threatening, or terminal illness was the norm in virtually all societies. In 1965, Glaser and Strauss wrote, “[A]merican physicians ordinarily do not tell patients outright that death is probable or inevitable. . . .[F]amilies also tend to guard the secret. Family members sometimes may reveal it, but in our own study we never witnessed deliberate disclosure by a family member.” Only in this generation has there been a rapid shift in American medical values from nondisclosure to disclosure. In most other countries, both developed and developing, the primary recipient of bad news is the family. Although the issue of nondisclosure is being debated with increasing frequency in the world literature, the question is typically whether the patient should be told, in addition to the family. For example, as Uchitomi and Yamawaki point out, “In Japan, all family members are informed by physicians of the cancer patient’s diagnosis, condition, and therapeutic program, before the cancer patient is told the truth.” Although American clinicians may view requests for nondisclosure as a threatening departure from norms of clinical practice, from a global perspective, we are the outliers. It is important to recognize that cultures are not monoliths; significant differences in opinion exist within cultural groups regarding nondisclosure. Numerous studies have found that where family-oriented decision making dominates, many individuals both recognize the propriety of nondisclosure and yet personally wish to be involved in their own health care decisions. Statements like, “In our country the family decides, but as for me, I would like to be told what is going on and decide myself,” are common.

Oral Transmucosal Fentanyl Citrate for Dyspnea in Terminally Ill Patients: An Observational Case Series

OBJECTIVE To evaluate the efficacy and safety of oral transmucosal fentanyl citrate (OTFC) in terminally ill patients experiencing dyspnea. METHODS Nonblinded, non-controlled observational study of patients admitted to the hospice/palliative care unit for dyspnea from May 2006 to March 2007. Eligible patients were older than 18 years of age with satisfactory baseline cognitive function diagnosed with end-stage congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or cancer complaining of dyspnea. At the onset of dyspnea, enrolled patients were instructed to slowly dissolve the OTFC lozenge and rate their dyspnea on a 10 point visual analog scale at 15-minute intervals for 60 minutes. Respiratory rate (RR) and arterial oxygen saturation (SaO(2)) were recorded at similar intervals. Patients were observed for approximately 48 hours. RESULTS Four patients were found eligible. In all four cases, patients experienced rapid relief of dyspnea as soon as five minutes. No significant adverse events were reported. CONCLUSIONS OTFC appears to be safe and effective for dyspnea in terminally ill patients. The study population is limited to four cases, however, the initial findings are promising and merit further research.

Pathophysiologies of Dyspnea Explained: Why Might Opioids Relieve Dyspnea and Not Hasten Death?

For many years palliative care clinicians have advocated for the use of opioids in the treatment of patients with dyspnea that is resistant to disease modification. And for at least as many years concern has been raised regarding possible respiratory suppression by opioids and the risk of hastening death. A number of studies have demonstrated evidence for significant improvement in dyspnea with opioid administration. Studies suggest minimal clinical impact on respiration or associated blood gasses with proper use and no significant effects on life expectancy. Although such studies are reassuring, an equally relevant question has often been neglected: If opioids are useful in the treatment of dyspnea, why do they work? What is the related physiology? This paper first reviews the pathophysiology of dyspnea and then discusses possible effects of opioids on this pathophysiology.

Endovascular Carotid Reconstruction in Palliative Head and Neck Cancer Patients with Threatened Carotid Blowout Presents a Beneficial Supportive Care Measure

ABSTRACT Carotid blowout is a devastating complication in patients with head and neck malignancy. The traditional surgical treatment for carotid blowout is often technically difficult and is associated with an unacceptably high morbidity and mortality. Recently, endovascular therapy has been proposed for head and neck surgical patients. Preliminary reports showed a better outcome with less morbidity and mortality compared to the previous treatment modalities. The use of such techniques in cases of impending or acute carotid blowout syndrome has been previously described to be beneficial for palliative head and neck cancer patients as well. We introduce a case of a head and neck cancer patient receiving palliative care, presenting with threatened carotid blowout, who was managed with endovascular placement of a covered stent under elective conditions in order to prevent an inevitable carotid rupture. In the present case endovascular carotid stenting allowed preservation of the vessel, prevented the dramatic situation of carotid rupture, and facilitated a rapid hospital discharge without any neurologic or stenting sequelae.

Intercultural differences and communication at the end of life

Cross-cultural encounters at the end of life are common and can result in misunderstandings and conflicts. The primary care physician is ideally suited to facilitate communication that can promote understanding and conflict resolution.

End-of-Life Graduate Education Curriculum Project

IN 1997, THE AMERICAN BOARD OF INTERNAL MEDICINE (ABIM) added “End-of-Life Care” to its educational requirements for post-graduate education. To assist residency programs develop the infrastructure to support this new change, a pilot project was begun in 1998 for 30 residency programs, supported by a grant from the Robert Wood Johnson Foundation with technical assistance from ABIM. This project has been continued with a goal of recruiting an additional 60 primary care residencies (Internal and Family Medicine) each year for 3 years. Project components included the following steps:

High context illness and dying in a low context medical world

This article provides an introduction to thefield of intercultural communication. Miscommunication among patients, families, and clinicians often results when participants are contextually ”out-of-synch.“ High context communication embeds more information in the contexts within which people communicate and is less dependent on language. Very sick and dying patients often use high context communication strategies. Low context communication stresses explicit verbal communication and is commonly used by clinicians. When clinicians use low context forms of communication with patients using high context styles, misunderstandings frequently arise. Suggestions are given for avoiding miscommunication and enhancing mutual understanding.

When do we stop, and how do we do it? Medical futility and withdrawal of care.

Dr Hinshaw: Welcome to the general session entitled “When Do We Stop, and How Do We Do It? Medical Futility and Withdrawal of Care.” This symposium is one of an ongoing series of symposia focused on palliative care organized by the Work Group for Surgical Palliative Care, jointly sponsored by the College and the Robert Wood Johnson Foundation. We are fortunate to be able to make this a highly interactive session, in which the Audience Interactive Response System will be used throughout the presentations to increase your involvement. Presentations include a brief introduction to the problem, followed by examination of the ethical issues involved in determining medical futility, how a determination of futility and the need for withdrawal of life-sustaining treatment is made, how withdrawal of life-sustaining treatment is accomplished effectively and compassionately, and, finally, the educational issues that add complexity to this topic will be examined. By way of introduction, I present an illustrative case, drawn from my practice. A 56-year-old man presents 5 months after having had a palliative choledochoenterostomy for a mass in the head of the pancreas and, unfortunately, a lymph node in the hepatoduodenal ligament that was positive for adenocarcinoma. Since the operation, he’s had more than a 30-pound weight loss, and has increasing weakness and fatigue, especially in the last 2 months. For the last 3 weeks before this presentation in clinic, he’s had significant, worsening postprandial vomiting. He now presents with a very large distended stomach with a mass obstructing the proximal duodenum. An endoscopist was unable to stent this, and the patient asked me to fix it. What should I do next?

Pain and Intercultural Communication

This chapter examines communication about chronic pain through the lens of intercultural communication. Intercultural communication as an anthropologic field offers a perspective that may heighten awareness of common pitfalls in communicating with people with pain. Also discussed are common relational subtexts in communication around pain, such as trust, power dynamics, legitimacy, and specialness. General strategies for dealing with these subtexts are presented in keeping with principles of intercultural communication.

Review Article: Access to End-Of-Life Care Venues

Quality of care at the end of life is strongly correlated with where patients die. This review discusses the influence of patient and health system variables affecting access to common venues of death-the acute care hospital, the nursing home, and home-with or without hospice. Access to care is considered in terms of a flow model, wherein pressure gradients push patients toward care in certain venues and away from alternatives. Dynamic interactions between patient-specific variables and health care system variables influence the nature of patient flow, moving patients toward certain terminal venues of care and away from others. Efforts to improve quality of care at the end of life must be cognizant of these effects and should work to adjust patterns of flow in more favorable directions.