Managing usual and unexpected pain with physical disability: a qualitative analysis.

OBJECTIVE: With physical disabilities, persons often experience secondary pain that adds to restrictions in activity and participation. We investigated pain-management strategies used by those with physical disabilities. METHOD: Qualitative phenomenological inquiry was used in multiple interviews with (N= 28) adults with physical disabilities (9 with amputation, 7 with cerebral palsy, and 12 with spinal cord injury) and subsequent thematic analysis. RESULTS: Among those with physical disabilities, a distinction is made between usual and unexpected pains. Usual pain is experienced consistently or as a consequence of not getting adequate rest, exercise, or stress-free time. Managing usual pain involves uses of prevention (e.g., exercise/fitness) and/or pragmatic actions through scheduling and pacing daily activities and taking interim retreats. Unexpected pain is experienced periodically and requires an immediate response and change of activity. To manage, persons describe making efforts to create a mind and body disassociation, activating safety nets to support function and alleviate pain, and making decisions to persevere with activity and participation. CONCLUSION: Advising those with physical disabilities to do proactive planning for both usual and unexpected pain may help them to use varied pain-management strategies to enhance function and minimize negative impacts on participation.

Opportunities and challenges to improving end-of-life care for seriously ill elderly patients: a qualitative study of generalist physicians.

BACKGROUND: End-of-life care quality deficiencies have in part been linked to inadequate physician skill in the technical and communication domains of palliative care. Yet few studies have examined physicians' perspectives regarding their experiences caring for patients approaching the end of life. OBJECTIVE: To understand generalist physicians' perspectives regarding their care of seriously ill elderly patients in order to identify challenges to improving end-of-life communication and decision-making. DESIGN: Qualitative study using in-depth ethnographic interviews. SETTING: Puget Sound region of Washington State. PARTICIPANTS: Thirteen community-based generalist physicians who routinely care for elderly patients and represent a range of practice styles and experiences. RESULTS: The physicians described a "revolving door syndrome" in which elderly patients are repeatedly hospitalized with chronic illness exacerbations. Three themes influenced physicians' interactions with "revolving door" patients: (1) physicians' use of decision-making heuristics, characterized as "internal gauges," to promote care consistent with their own values; (2) families' "unreasonable expectations" that patients would return to their previous health after treatment of an acute illness; and (3) families' reluctance to accept end-of-life decision-making responsibility. CONCLUSIONS: Our findings suggest that physician values and physician-family interactions impact decision-making for chronically ill elderly patients. The influence of physicians' internal gauges on end-of-life care can facilitate or hinder use of palliative care as well as decision-making consistent with patients' preferences. Disparate physician and family expectations regarding their division of decision-making responsibility and patients' care outcomes may also affect decision-making. The use of communication strategies that promote alignment of these expectations may improve decision-making quality for incapacitated elderly patients.

Hospice patients' attitudes regarding spiritual discussions with their doctors.

The purpose of this study was to assess hospice patients' attitudes regarding the discussion of spiritual issues with their physicians. We conducted in-depth interviews using open-ended questions on living with illness, spirituality and religion, and physician-patient relationships. The interviews were audiotaped, transcribed, and analyzed for dominant themes. The following dominant themes were identified: (1) treating the whole person, (2) treating with sensitivity, (3) favorable attitudes toward religious or spiritual discussions with doctors, and (4) no "preaching." Our findings suggest that patients do not expect physicians to be their primary spiritual advisors; however, physicians should be aware of and comfortable communicating with patients about religious or spiritual issues. More training in this topic may enhance the care physicians provide to patients near the end of life.

Decision making in head and neck cancer care.

OBJECTIVES/HYPOTHESIS: To describe patterns of patient involvement in head and neck cancer decision making. STUDY DESIGN: Prospective longitudinal ethnography of otolaryngology patients making treatment decisions. METHODS: Grounded theory analysis of verbatim transcripts and original voice recordings from: 1) participant-driven diaries, 2) participants' office visits with their physicians, and 3) semistructured interviews completed after a treatment decision had been made. RESULTS: Patients with serious illness and experiencing considerable pain, discomfort, or alteration in the ability to perform activities of daily living, and who fear for their life, do not make decisions in a way that adheres to the conventional model of decision making, which presumes a sequential, office-based interaction with clear patient autonomy. These patients have the ability to interpret information they receive during office visits, but they describe making a treatment decision as "deciding to do something" not choosing a specific treatment. This group also describes "trust" or "confidence" in the physician as the most important factor in making a decision, not the type or amount of information received. They move through providers toward treatment in a linear fashion, from one physician specialty to the next, usually without doubling back to revisit previous decisions or discussions. CONCLUSIONS: Decision making in serious illness unfolds differently than in less serious problems. The conventional model does not fit this patient population, and reliance on trust of the physician figures prominently. Decision support should be aimed at physician decision making, promoting explicit incorporation of patient-specific data into the process.

Pathological effects of the supermaximum prison.

The drawings of Todd (Hyung-Rae) Tarselli, a prisoner confined in a Pennsylvania "close-security" or "supermaximum" prison, tell a story--one that graphically portrays the devastating effects of a prison on the mental health of its inmates.

Mutual mistrust in the medical care of drug users: the keys to the "narc" cabinet.

OBJECTIVE: Caring for patients who are active drug users is challenging. To better understand the often difficult relationships between illicit drug-using patients and their physicians, we sought to identify major issues that emerge during their interactions in a teaching hospital. DESIGN: Exploratory qualitative analysis of data from direct observation of patient care interactions and interviews with drug-using patients and their physicians. SETTING: The inpatient internal medicine service of an urban public teaching hospital. PARTICIPANTS: Nineteen patients with recent active drug use, primarily opiate use, and their 8 physician teams. RESULTS: Four major themes emerged. First, physicians feared being deceived by drug-using patients. In particular, they questioned whether patients' requests for opiates to treat pain or withdrawal might result from addictive behavior rather than from "medically indicated" need. Second, they lacked a standard approach to commonly encountered clinical issues, especially the assessment and treatment of pain and opiate withdrawal. Because patients' subjective report of symptoms is suspect, physicians struggled to find criteria for appropriate opiate prescription. Third, physicians avoided engaging patients regarding key complaints, and expressed discomfort and uncertainty in their approach to these patients. Fourth, drug-using patients were sensitive to the possibility of poor medical care, often interpreting physician inconsistency or hospital inefficiency as signs of intentional mistreatment. CONCLUSION: Physicians and drug-using patients in the teaching hospital setting display mutual mistrust, especially concerning opiate prescription. Physicians' fear of deception, inconsistency and avoidance interacts with patients' concern that they are mistreated and stigmatized. Medical education should focus greater attention on addiction medicine and pain management.

Physical disability and the experience of chronic pain.

OBJECTIVES: To obtain an insider's view about disability-related pain to help rehabilitation clinicians understand the experience and to show how people with disability manage daily living and encounters with other people. DESIGN: Qualitative methods by using open-ended interviews and thematic analysis. SETTING: Rehabilitation research program. PARTICIPANTS: Nine adults with chronic physical disability and pain were recruited from study groups. The 9 included people with spinal cord injury, acquired amputation, or cerebral palsy. INTERVENTION: Interview protocol. MAIN OUTCOME MEASURE: Phenomenologic analysis of interviews based on codewords derived from interview topics and themes. RESULTS: Study participants described pain as a part of daily living that influenced many lifestyle decisions. They characterized pain as plural, meaning that it has multiple locations, distinctive descriptions, and different implications. They also were concerned about pain being a mystery, having unclear causes and consequences. Typically they described pain as a personal venture, with little or dissatisfying communication about pain with family, friends, or health care providers. CONCLUSIONS: Understanding pain associated with physical disability can help guide rehabilitation practitioners in their pain assessments, interventions, and related research. Our findings suggest that some people with disability-related pain may benefit from reassurance and specific planning for expected and unexpected pain episodes.