Creating New Normals in Cancer Care: A Review of The Art of the Possible

Palliative care (PC) is often recommended by physicians for their elderly patients who are terminally ill. In contrast to hospice care, which precludes the use of any curative treatment at life's end stages, PC seeks primarily to comfort patients and to keep them pain free, yet it does not necessarily preclude medical treatment. It does seek to attend to patients' physical as well as psychological, emotional, spiritual, and existential needs in an attempt to enhance overall quality of life.

A review of current literature in PC for oncology patients, elderly and otherwise, reveals a curious irony: Although PC plausibly entails a holistic, patient-centered approach to health care, much of the research on PC and, apparently, many of the practices in PC focus almost exclusively on the biomedical approach to patient care, particularly in regard to pain and symptom management. Furthermore, few methods in PC research incorporate patients' narratives and lived experiences in the final stages of their lives. We argue that a holistic, patient-centered approach must guide research in PC, including the treatment of elderly patients as "active interpreters, managers, and creators of the meaning of their health and illness" (Vanderford, Jenks, &; Sharf, 1997, p.14) and of the meaning of their lives.     

Patients' experiences of peritoneal dialysis at home: a phenomenological approach

The aim of this study was to highlight the meaning of home dialysis as experienced by patients with chronic renal failure. The research design was influenced by Ricoeur's phenomenology. Nineteen patients from a Brazilian public hospital were interviewed, from May to September 2009. Interviews were guided by the question: "Tell me about your experiences lived undergoing PD". Findings unveiled the patients' perception of the drastic changes in their existence, consequent to disease and treatment; and the perception of themselves in that process. The feeling of anguish, physical pain and deprivations were part of living that condition. They foresee an uncertain future, depending on the expertise of health care providers and the demands on support of significant others. Findings suggest that individual aspects of patients' experiences must be considered if health care providers are to facilitate positive health outcomes.     

The emergence of Ideal Micro Practices for patient-centered, collaborative care

Ideal Micro Practices are capable of delivering patient-centered collaborative care. With respect to comparable adult patients in "usual" care settings, twice as many patients who use Ideal Micro Practices report they receive care that is "exactly what they want and need exactly when and how they want and need it" (68% vs 35%). Compared to usual care, these very small, low-overhead practices are more likely to have patients report very high levels of continuity (98% vs 88%), efficiency (95% vs 73%), and access (72% vs 53%). Patient ratings of very good information (83% vs 67%) and clinician awareness of pain or emotional problem are also higher (87% vs 69%). However, only a slim majority of patients using Ideal Micro Practices report that they are confident in their ability to manage and control their health problems or concerns. Ideal Micro Practices are sharing new tools and approaches to better understand their patients' needs and increase patients' confidence in their ability to manage conditions. In addition, these practices are working collaboratively to standardize their approaches and make the essential elements of Ideal Micro Practice replicable.     

Making space for disruption: putting patients at the center of health care

"Disruptive innovation" will only stimulate the transformation of health care when the regulatory and payment environment allows consumers to set our society's priorities for value. Legislators need to put patients' interests before those of the powerful lobbies that are in front of them every day. Purchasers must hold their health plans to higher, more patient-centered standards. Both government and private payers need to reset the rules to allow into their networks "disrupters" that will deliver more cost-effective care for patients.     

Creating an infrastructure for the productive sharing of clinical information

The need for a patient-centered approach to health care services delivery is well recognized. Health care has become more specialized, with increasing numbers of disciplines and subdisciplines. In addition, both providers and community are increasingly mobile. As a consequence, patients see more providers, which has led to increasing fragmentation of patient-centered care and in particular of patients' personal health records. Clinicians and patients alike recognize the need to ensure that care information is patient-centered, continuous, and integrated in order to optimize the effectiveness of proactive and reactive care. Current arrangements, however, including the architecture of medical record and information management systems, are mainly provider- and service-centered and may not readily support the sharing of data to this end.     

“Open Your Heart First of All”: Perspectives of Holistic Providers in Costa Rica About Communication in the Provision of Health Care

Research documents how the care the holistic providers offer represents the quality communication that patients often do not receive from their biomedical providers. However, research investigating the perspectives of holistic providers concerning the role they see themselves playing in the provision of health is limited. This research explores the perceptions of holistic providers in Costa Rica about their communication with their patients. The results reveal two practices of communication—authenticating and integrating as central to providers' communication with patients in the provision of holistic health care. Providers describe their communication as an exploration of an anatomy of pain/suffering, including investigating the location, timing, length, intensity, and overall rhythm of the patient's condition and sense making that leads them to seek the care of a holistic provider. Most holistic providers see their role as being careful or full of care and suggest that they have an obligation to open their heart first of all.     

Individual interviews with elderly in a rural area: expectations for medical care services

INTRODUCTION: As intensive health care users, the elderly contribute significantly to rising health care cost in Japan. This research sought to elucidate the decision making processes elderly use when seeking medical care and their expectations of medical facilities and physicians. METHODS: We conducted qualitative individual interviews with rural elderly, over 65 years old, who had access to private physician offices, community, regional, and university hospitals. Interview questions elicited participants' experiences in seeking medical care; their most memorable experiences in hospitals; and their expectations for medical services. After the individual interviews, we surveyed the participants to verify the results. RESULTS: A total of 19 individuals participated in these interviews. These 19 individuals and an additional five individuals who met eligibility criteria were surveyed by mail after the interviews and verified the results. The participants identified "a feeling of intimacy" and "receiving kind-hearted treatment" as the most important attributes of medical facilities. Other important factors included: accommodating patients' preferences; being close to home; earning the patient trust; and having a well organized infrastructure. Comparatively important element were: "technology and skill", "opinion and reputation of third person", "length in the latency", "continued medical treatment by the same doctor", "actual feeling of improvement", "introduction to a higher order medical facility", "multiple medical departments", and "medical judgement by multiple doctors". These factors fall into three categories: emotional expectations; expectations of the health system; and convenience in daily life. The survey data confirmed these findings. DISCUSSION: These results suggested that elderly expect "supportive" and "accommodating" health care services in which the medical activity does not cause problems for daily life. However, these vague expectations for the medical system need translated into practical steps. Still, it is important for health care providers to consider these expectations and the relationships among them. These findings corroborate the results of a previous investigation that used focus group interviews.     

Resource planning for patient-centered, collaborative care

In this article, we use self-reported information from 13,271 older adults and the results from several controlled trials to construct a planned-care management strategy that cuts across diseases and conditions and also addresses health disparities attributed to low socioeconomic status. Three strata result from the interaction of patients' financial status, the presence or absence of bothersome pain and psychosocial problems, and their confidence with self-care. A majority of ambulatory patients generally fall in the first stratum. More resources are required in the 2 remaining strata to attain patient-centered, collaborative care. Because the planned-care management strategy is behaviorally sophisticated, it is likely to be more efficient and effective than strategies based on concepts of disease management that focus on either a single disease or groupings of patients who are "high utilizers" of healthcare. We conclude that modern technologies and related approaches make resource planning for patient-centered, collaborative care feasible and desirable.     

The impact of patients' influence on recovery in a group of patients with dyspepsia.

BACKGROUND: The approach to health and disease can either be salutogenic (origins of health) or pathogenic (disease causing), which thus makes recovery a concept featuring several different angles. Antonovsky, with his concept of salutogenesis, tried to reach a more complete understanding of its favourable effects on health. OBJECTIVE: We aimed to investigate, understand and learn from the experiences of a small group of patients about factors leading to recovery. METHODS: A qualitative approach was used to explore patient experiences. One semi-structured interview was conducted by one of the authors (BN) with each of the 18 patients suffering from dyspepsia who had been investigated by means of gastroscopy at a university hospital clinic 12-15 years previously. The interviews were recorded either in written notes composed directly after the interviews or tape-recorded and subsequently transcribed. A modified form of grounded theory according to Strauss-Corbin was used to analyse the data. RESULTS: A pattern featuring five types of patients' influence on their lives was discerned, ranging from "a sense of no possibility of having an influence on existence/life" to "having influence". Strategies used by patients to maintain health could be categorized into four types: "extremists", "oscillators", "leapers" and "full-scalers". CONCLUSIONS: Listening to patients who had experiences with dyspepsia brought patient influence on their own lives and on the care process into focus. We consider that there might be a link between patients having an influence on their lives and their being healthy today. In clinical practice, patient recovery and health promotion could gain from a perspective where patient influence is treated with esteem and emphasized in the consultation. In the future, research design could benefit from taking patient influence on the care process into consideration. However, no causal linkage between patient influence and patient outcome was established in this study. In order to do that, studies with quantitative design should be undertaken in the future.     

Power imbalance and consumerism in the doctor-patient relationship: health care providers' experiences of patient encounters in a rural district in India

The aim of this study is to explore health care providers' experiences and perceptions of their encounters with male and female patients in a rural district in India with special reference to tuberculosis (TB) care. The authors conducted semistructured interviews with 22 health care providers, 17 men and 5 women, from the public and private health care sectors. Findings reveal that doctors adopted an authoritarian as well as a consumerist approach in the medical encounter, indicating that power imbalances in the doctor-patient relationship are negotiable and subject to change. Gender was identified as an influencing factor of the doctor's dominance. A patient-centered approach, acknowledging patients' own experiences and shared decision making, is called for and should be included in TB control activities. This seems to be especially important for female patients, whose voices were not heard in the medical encounter.     

The value of "life at any cost": talk about stopping kidney dialysis

With the trend toward an older, sicker dialysis population in the USA, discussions of ethical issues surrounding dialysis have shifted from concerns about access to and availability of the therapy, to growing unease about non-initiation and treatment discontinuation. Recent studies report treatment withdrawal as the leading cause of death among elderly dialysis patients. Yet, the actual activities that move patients toward stopping treatment often remain obscure, even to clinicians and patients themselves. This paper explores that paradox, drawing on anthropological research among patients over age 70, their families, and clinicians in two California renal dialysis units. It concludes that many older patients sacrifice a sense of choice about dialysis in the present to maintain "choice" as both value and possibility for the future. Even so, patients desire more information and communication, provided earlier in their illness, about prognosis, how long they can expect to be on dialysis, and what the impact of the treatment will be on their daily lives. That, with time, there is a transition to be made from dialysis as "treatment" to end of life care could be better explained and managed to alleviate patients' confusion and unneeded isolation.     

Challenges facing providers caring for HIV/HCV-coinfected patients

Despite the high prevalence of hepatitis C virus (HCV) infection among injection drug users also infected with human immunodeficiency virus (HIV), and the synergistic adverse effect of the two diseases on patients' health and survival, research on the clinical management of these patients and particularly the low uptake of HCV therapy is limited. We conducted qualitative interviews with 17 HIV providers from two urban public hospitals. We discovered that the limitations of the current state of medical knowledge, the severe side effects of HIV and HCV therapies, and the psychosocial vulnerability of HIV/HCV-coinfected patients combined with their resistance to becoming informed about HCV posed significant challenges for providers. To contend with these challenges, providers incorporated key dimensions of patient-centered medicine in their practice, such as considering their patients' psychosocial profiles and the meaning patients assign to being coinfected, and finding ways to engage their patients in a therapeutic alliance.     

The impact of patient-centered care on outcomes

BACKGROUND: We designed this observational cohort study to assess the association between patient-centered communication in primary care visits and subsequent health and medical care utilization. METHODS: We selected 39 family physicians at random, and 315 of their patients participated. Office visits were audiotaped and scored for patient-centered communication. In addition, patients were asked for their perceptions of the patient-centeredness of the visit. The outcomes were: (1) patients' health, assessed by a visual analogue scale on symptom discomfort and concern; (2) self-report of health, using the Medical Outcomes Study Short Form-36; and (3) medical care utilization variables of diagnostic tests, referrals, and visits to the family physician, assessed by chart review. The 2 measures of patient-centeredness were correlated with the outcomes of visits, adjusting for the clustering of patients by physician and controlling for confounding variables. RESULTS: Patient-centered communication was correlated with the patients' perceptions of finding common ground. In addition, positive perceptions (both the total score and the subscore on finding common ground) were associated with better recovery from their discomfort and concern, better emotional health 2 months later, and fewer diagnostic tests and referrals. CONCLUSIONS: Patient-centered communication influences patients' health through perceptions that their visit was patient centered, and especially through perceptions that common ground was achieved with the physician. Patient-centered practice improved health status and increased the efficiency of care by reducing diagnostic tests and referrals.     

Team meetings in specialist palliative care: asking questions as a strategy within interprofessional interaction

In this article, I explore what happens when specialist palliative care staff meet together to discuss patients under their care. Many studies (e.g., Atkinson) have discussed how health care practitioners in various settings use rhetorical strategies when presenting cases in situations such as ward rounds and team meetings. Strategies for arguing and persuading are central to medical practice in the interprofessional context. The context of specialist palliative care is an interesting place for research, as there is a history of patient-centered holistic approaches to care, within a multidisciplinary context, that is interdisciplinary in its focus, structure, and practice (e.g., Saunders). This article examines the rhetorical accomplishment of teamwork in specialist palliative care settings.     

Men at risk: considering masculinity during hospital-based social work intervention

The needs of hospitalized male patients are often unrecognized and unmet. Men occupy greater than half of all inpatient hospital beds and incur a broad array of illnesses and injuries at higher rates than women--yet often receive health care that pays surprisingly little attention to the concept of patient masculinity, or to masculinity's influence on the male patient's perspectives, behaviors, goals, interests, needs, and challenges. Little emphasis is placed on considering hospitalized male patients as men , understanding their need for patient-centered care within this context, and intervening in ways that regularly allow strengths to be adequately recognized and utilized. In this article, we explore how hospital social workers can reconsider masculinity as a vibrant and formative component of male patients' lives and actively view its characteristics as comprising more than just potential challenges to medical treatment--but also as untapped sources of resilience and strength.     

Is there a GP in the hospital?

Modern health care is increasingly complex with a progression to specialisation and super specialisation in the primary and tertiary settings. Traditional models of health such as the biomedical model are often inadequate. The value of a more holistic approach to patients' health problems has been long accepted by the medical profession. As health care becomes more fragmented we are overlooking the potential benefits of a generalist approach in improving the care of patients in our hospitals. This article examines the potential benefits of involving general practitioners in the tertiary care setting.     

Training physicians about caring for persons with disabilities: "Nothing about us without us!"

According to the World Report on Disability, physicians worldwide generally lack training about caring for persons with disabilities, thus frequently compromising their health care experiences and health outcomes. Many U.S. physicians are similarly untrained about critical aspects of providing care to persons with disabilities, perhaps contributing to disparities in their care. Recognizing these inadequacies, U.S. medical educators are beginning to develop core competencies for trainees relating to the care of patients with disabilities, including understanding patients' perceptions of their quality of life and skills in providing patient-centered care. Having today's physicians, even when genuinely well-intentioned, retain control over designing disability-related training programs for future doctors may miss critical issues in caring empathically and effectively for persons with disabilities. Involving persons with disabilities in identifying training needs and implementing curricula for future physicians may offer important opportunities for ensuring their competency to provide patient-centered care to persons with disabilities.     

Life-saving treatments and disabilities. Are all QALYs created equal?

OBJECTIVES: Decision-makers and the general public are often reluctant to adopt policy recommendations based exclusively upon cost-utility analyses. One possible reason explored here is that patients' previous health state before experiencing the onset of an acute life-threatening illness may influence the value of saving those patients' lives. METHODS: We surveyed members of the general public to see the relative importance of saving patients' lives when some patients could be returned to perfect health and others would live the remainder of their years with paraplegia. Among this latter group, some were described as having pre-existing paraplegia. Others were described as having as having the onset of paraplegia. The relative importance of saving each of these lives was measured using the person trade-off method. RESULTS: Six hundred five subjects completed questionnaires, and 250 met pre-established consistency criteria and were included in the final analysis. Overall, subjects placed equal importance on saving the lives of people with pre-existing paraplegia versus those who could be returned to perfect health because they did not have pre-existing paraplegia. In contrast, respondents gave lower priority to patients who would experience the onset of paraplegia after having their lives saved, especially if their paraplegia was avoidable with an alternative treatment. CONCLUSION: People do not think that all quality-adjusted life-years are created equal. Instead, the value that people place on treatment programs depends on patients' state of health before developing life-threatening illnesses, and on whether alternative treatments are available that provide better health outcomes for the patients. These results may explain, in part, public discomfort over basing health care priorities on cost-utility analysis.     

Das Arzt-Patient-Verh?ltnis im Sinn patientenzentrierter Medizin

"Health" and "illness" are multilayered terms. The understanding of human health depends, apart from scientific aspects, on people's individual perceptions as well as on aspects of culture and world view. The ideal of patient-centered medicine requires that a physician does not merely have to establish an objectifiable diagnosis. Rather, a physician should also respect the patients' right to self-determination, their personal values, and their subjective view of health and illness. The philosophy of dialogue, which developed in the twentieth century, offers a conceptual background for this ideal. On an empirical basis, the successful communication between doctor and patient can be interpreted as a useful placebo phenomenon. Alternative medicine puts great emphasis on the doctor's attentive care. This also explains why the alternative branch of medicine has appealed to many patients. Therefore, science-oriented medicine should review methods in which the doctor's empathy and dialogue ability are crucial to treatment success. It is part of the physician's responsibility to appreciate the personal perspectives of patients, to respect them and, if necessary, to engage with them critically.