Through Clinicians Eyes: Use of an In-consultation Patient Decision Aid in Radiation Treatment for Early Breast Cancer. A Qualitative Study.

INTRODUCTION: Shared decision making (SDM) has become a crucial element on the political agenda and represents a vital aspect of modern healthcare. However, successful implementation of SDM highly depends on the attitude of clinicians towards SDM. The overall aim of our study was to explore the experience of oncologists and nurses with SDM using the Decision Helper, an in-consultation decision aid, at four Danish radiotherapy departments. METHODS: Semi-structured interviews were conducted with 20 clinicians. The participants were selected using purposive sampling to include nurses and oncologists, male and female, with different levels of experience with SDM and clinical work. The analysis was a data-driven, iterative process with inductive coding of all interviews and meaning condensation. RESULTS: Two main themes emerged: "Using the Decision Helper changes the consultation" and "Change of attitude among Danish oncologists." Each of the two themes included four elaborative subthemes, which are reported with supporting citations in this paper. In brief, the use of SDM and the Decision Helper should ideally be adjusted to the individual patient and depends highly on the oncologist. The participants described ambitions towards "making the right decision for this patient at this time." The healthcare system, however, has pitfalls that may hinder SDM, e.g., rigid interpretation of guideline-based recommendations. CONCLUSION: Using an in-consultation Decision Helper has the potential for individualized, structured patient engagement in decision making. There is a need for patient decision aids in clinical guidelines to ensure patient engagement in decision making.

Shared decision making with breast cancer patients - does it work? Results of the cluster-randomized, multicenter DBCG RT SDM trial.

BACKGROUND AND PURPOSE: Shared decision making (SDM) is a patient engaging process advocated especially for preference-sensitive decisions, such as adjuvant treatment after breast cancer. An increasing call for patient engagement in decision making highlights the need for a systematic SDM approach. The objective of this trial was to investigate whether the Decision Helper (DH), an in-consultation patient decision aid, increases patient engagement in decisions regarding adjuvant whole breast irradiation. MATERIAL AND METHODS: Oncologists at four radiotherapy units were randomized to practice SDM using the DH versus usual practice. Patient candidates for adjuvant whole breast irradiation after breast conserving surgery for node-negative breast cancer were eligible. The primary endpoint was patient-reported engagement in the decision process assessed with the Shared Decision Making Questionnaire (SDM-Q-9) (range 0-100, 4 points difference considered clinical relevant). Other endpoints included oncologist-reported patient engagement, decisional conflict, fear of cancer recurrence, and decision regret after 6 months. RESULTS: Of the 674 included patients, 635 (94.2%) completed the SDM-Q-9. Patients in the intervention group reported higher level of engagement (median 80; IQR 68.9 to 94.4) than the control group (71.1; IQR 55.6 to 82.2; p < 0.0001). Oncologist-reported patient engagement was higher in the invention group (93.3; IQR 82.2 to 100) compared to control group (73.3; IQR 60.0 to 84.4) (p < 0.0001). CONCLUSION: Patient engagement in medical decision making was significantly improved with the use of an in-consultation patient decision aid compared to standard. The DH on adjuvant whole breast irradiation is now recommended as standard of care in the Danish guideline.

Community Health Partners in Unexpected Places.

Overcoming barriers to accessing health services is especially difficult in minority groups and rural populations. Nontraditional sites for delivering health care in the United States offer opportunities to reduce health disparities. Actually realizing these reductions, however, requires health systems to partner with trusted, convenient community services where people who experience health disparities spend substantial time - and, in turn, for those trusted service sites to seek partnerships with health systems. Libraries, places of worship, laundromats, barber shops, fire departments, dollar stores, shopping malls, and other local sites offer the chance to serve people who most need supportive health services in places they already trust enough to meet their other basic needs. Examples of such community health partnerships are cropping up around the United States, with some showing great success, although typically on a small scale. So, how will these small-scale successes proliferate? The answer lies in the "nuts and bolts" of implementation logistics. First, successful community health partnerships must be cultivated so that health systems and community venues co-design programs with direct input from community members. Second, entities seeking partnerships must explore multiple ways to procure funding. Third, coordinated efforts must be made to create awareness among the population a program seeks to serve. Fourth, day-to-day operations may need to be conducted in novel ways, especially considering physical, technological, and other implementation challenges that most nontraditional sites would face. As such successes proliferate and garner publicity, community health partnerships will be formed in greater numbers of unexpected places, with an ever-growing potential to reduce health disparities.

Mitigating Moral Injury for Palliative Care Clinicians.

Palliative care clinicians (PCCs) in the United States face the combination of increasing burnout and a growing need for their services based on demographic changes and an increasing burden of serious illness. In addition to efforts to increase the number of PCCs and to train other clinicians in "primary palliative skills," we must address the burnout in the field to address the growing gap between need for this care and capacity to provide it. To address burnout in PCCs, we must develop solutions with the unique contributors to burnout in this field in mind. PCCs are particularly susceptible to moral distress and moral injury faced by all clinicians, and these states are inextricably linked to burnout. We propose three solutions to address moral distress and moral injury in PCCs to reduce burnout. These solutions are grounded in the dilemmas particular to palliative care and in best evidence: first, to create space for PCCs to confront moral challenges head-on; second, to integrate ethics consultations into care of some patients cared for by PCCs; and third, to reassess care models for PCCs. These approaches can mitigate burnout and thus address the growing gap in our ability to provide high-quality palliative care for those patients in need.

The High Stakes of Outsourcing in Health Care.

Outsourcing in health care has become increasingly common as health system administrators seek to enhance profitability and efficiency while maintaining clinical excellence. When clinical services are outsourced, however, the outsourcing organization relinquishes control over its most important service value: high-quality patient care. Farming out work to an external service provider can have many unintended results, including inconsistencies in standards of care; harmful medical errors; declines in patient and employee satisfaction; and damage to clinicians' morale and income, and to the health organization's culture, reputation, and long-term financial performance. Research on outsourcing in the areas of emergency medicine, radiology, laboratory services, and environmental services provides concerning evidence of potentially large downsides when outsourcing is driven by short-term cost concerns or is planned without diligently considering all of the ramifications of not keeping key clinical and nonclinical services in-house. To better equip health system leaders for decision-making about outsourcing, we examine this body of literature, identify common pitfalls of outsourcing in specific clinical and nonclinical health services and scenarios, explore alternatives to outsourcing, and consider how outsourcing (when necessary) can be done in a strategic manner that does not compromise the values of the organization and its commitment to patients.

Trust-Based Partnerships Are Essential - and Achievable - in Health Care Service.

When people think about trust in the context of health care, they typically focus on whether patients trust the competence of doctors and other health professionals. But for health care to reach its full potential as a service, trust must also include the notion of partnership, whereby patients see their clinicians as reliable, caring, shared decision-makers who provide ongoing "healing" in its broadest sense. Four interrelated service-quality concepts are central to fostering trust-based partnerships in health care: empathetic creativity, discretionary effort, seamless service, and fear mitigation. Health systems and institutions that prioritize trust-based partnerships with patients have put these concepts into practice using several concrete approaches: investing in organizational culture; hiring health professionals for their values, not just their skills; promoting continuous learning; attending to the power of language in all care interactions; offering patients "go-to" sources for timely assistance; and creating systems and structures that have trust built into their very design. It is in the real-world implementation of trust-based partnership that health care can reclaim its core mission.

Using Evidence to Design Cancer Care Facilities.

The nuts and bolts of planning and designing cancer care facilities-the physical space, the social systems, the clinical and nonclinical workflows, and all of the patient-facing services-directly influence the quality of clinical care and the overall patient experience. Cancer facilities should be conceived and constructed on the basis of evidence-based design thinking and implementation, complemented by input from key stakeholders such as patients, families, and clinicians. Specifically, facilities should be designed to improve the patient experience, offer options for urgent care, maximize infection control, support and streamline the work of multidisciplinary teams, integrate research and teaching, incorporate palliative care, and look beyond mere diagnosis and treatment to patient wellness-all tailored to each cancer center's patient population and logistical and financial constraints. From conception to completion to iterative reevaluation, motivated institutions can learn to make their own facilities reflect the excellence in cancer care that they aim to deliver to patients.

Is it time to reconsider the term "cancer survivor"?

PURPOSE: To improve understanding of how people diagnosed with cancer perceive the term "cancer survivor" and what influences those perceptions. DESIGN: Patients' reactions to the term were surveyed quantitatively and qualitatively. SAMPLE: Women who have primarily experienced breast cancer belonging to The Dr. Susan Love Research Foundation's Army of Women. METHODS: An online survey including fixed-alternative and open-ended questions. CONCLUSIONS: Using the blanket term "survivor" to label a diverse group is problematic; although the term offers a positive identity for some, others reject it or find it offensive, at least for patients like those represented in this study. If cancer patients are going to be labeled, they should choose the one that is most empowering and reflective of their experience. Implications for Psychosocial Providers: Language used in providing care or describing patients is controllable. If evidence exists that a particular term has the potential to inflict psychological harm, why use the term?

Improving Nonclinical and Clinical-Support Services: Lessons From Oncology.

Nonclinical and clinical-support personnel serve patients on the front lines of care. Their service interactions have a powerful influence on how patients perceive their entire care experience, including the all-important interactions with clinical staff. Ignoring this reality means squandering opportunities to start patients out on the right foot at each care visit. Medical practices can improve the overall care they provide by focusing on nonclinical and clinical-support services in 5 crucial ways: (1) creating strong first impressions at every care visit by prioritizing superb front-desk service; (2) thoroughly vetting prospective hires to ensure that their values and demeanor align with the organization's; (3) preparing hired staff to deliver excellent service with a commitment to ongoing training and education at all staff levels; (4) minimizing needless delays in service delivery that can overburden patients and their families in profound ways; and (5) prioritizing the services that patients consider to be most important. We show how cancer care illustrates these principles, which are relevant across medical contexts. Without nonclinical and clinical-support staff who set the right tone for care at every service touchpoint, even the best clinical services cannot be truly optimal.

Lessons in Integrating Shared Decision-Making Into Cancer Care.

The benefits of shared decision-making (SDM) in health care delivery are well documented, but implementing SDM at the institutional level is challenging, particularly when patients have complex illnesses and care needs, as in cancer. Denmark's Lillebaelt Hospital, in creating The Patient's Cancer Hospital in Vejle, has learned key lessons in implementing SDM so that the organization's culture is actually being transformed. In short, SDM is becoming part of the fabric of care, not a mere add-on to it. Specifically, the hospital chose and structured its leadership to ensure that SDM is constantly championed. It organized multiple demonstration projects focused on use of decision aids, patient-reported outcome measures, and better communication tools and practices. It designed programs to train clinicians in the art of doctor-patient communication. It used research evidence to inform development of the decision aids that its clinicians use with their patients. And it rigorously measured SDM performance in an ongoing fashion so that progress could be tracked and refined to ensure continuous improvement. Initial data on the institution's SDM initiatives from the Danish national annual survey of patients' experiences show substantial progress, thereby motivating Lillebaelt to reassert its commitment to the effort, to share what it has learned, and to invite dialogue among all cancer care organizations as they seek to fully integrate SDM in daily clinical practice.

Role of Kindness in Cancer Care.

The wonders of high-tech cancer care are best complemented by the humanity of high-touch care. Simple kindnesses can help to diffuse negative emotions that are associated with cancer diagnosis and treatment-and may even help to improve patients' outcomes. On the basis of our experience in cancer care and research, we propose six types of kindness in cancer care: deep listening , whereby clinicians take the time to truly understand the needs and concerns of patients and their families; empathy for the patient with cancer, expressed by both individual clinicians and the care culture, that seeks to prevent avoidable suffering; generous acts of discretionary effort that go beyond what patients and families expect from a care team; timely care that is delivered by using a variety of tools and systems that reduce stress and anxiety; gentle honesty, whereby the truth is conveyed directly in well-chosen, guiding words; and support for family caregivers, whose physical and mental well-being are vital components of the care their loved ones receive. These mutually reinforcing manifestations of kindness-exhibited by self-aware clinicians who understand that how care is delivered matters-constitute a powerful and practical way to temper the emotional turmoil of cancer for patients, their families, and clinicians themselves.

When Patients and Their Families Feel Like Hostages to Health Care.

Patients are often reluctant to assert their interests in the presence of clinicians, whom they see as experts. The higher the stakes of a health decision, the more entrenched the socially sanctioned roles of patient and clinician can become. As a result, many patients are susceptible to "hostage bargaining syndrome" (HBS), whereby they behave as if negotiating for their health from a position of fear and confusion. It may manifest as understating a concern, asking for less than what is desired or needed, or even remaining silent against one's better judgment. When HBS persists and escalates, a patient may succumb to learned helplessness, making his or her authentic involvement in shared decision making almost impossible. To subvert HBS and prevent learned helplessness, clinicians must aim to be sensitive to the power imbalance inherent in the clinician-patient relationship. They should then actively and mindfully pursue shared decision making by helping patients trust that it is safe to communicate their concerns and priorities, ask questions about the available clinical options, and contribute knowledge of self to clinical decisions about their care. Hostage bargaining syndrome is an insidious psychosocial dynamic that can compromise quality of care, but clinicians often have the power to arrest it and reverse it by appreciating, paradoxically, how patients' perceptions of their power as experts play a central role in the care they provide.