Abstract
Johnson RF: “Farewell” to prognosis in shared decision-making. Am J Hospice Palliat Care 2019 [E-pub ahead of print]; DOI: 10.1177/1049909119885323.
Whether because of a cultural pattern or personal preference, palliative care clinicians encounter persons approaching the end of life who wish to limit or forego prognostic information relating to their situation. This scenario has received attention in a recent motion picture as well as a newly available advance directive modification—the Prognosis Declaration form. The ordinary expectation for end of life shared decision making with a capable person is clinician disclosure of the best effort at prognostic assessment. The optimal match between the expressed values, goals, and preferences of the person with available clinician expertise is hopefully achieved. For the clinician, a person's choice to modify information disclosure and participation in shared decision making represents a significant challenge of balancing key ethical principles of intervention with tolerance and compassion for these different preferences. Attention to communication strategies that elicit and appropriately reassess individual information and decision-making wishes, flexibility in information disclosure patterns with capable persons and their representatives, and recognition that a respect for autonomy includes the choice to opt out can approach this challenge while providing compassionate and ethical end-of-life care.
Herrmann A, Carey ML, Zucca AC, et al.: Australian GPs' perceptions of barriers and enablers to best practice palliative care: A qualitative study. BMC Palliat Care 2019;18:90.
General practitioners (GPs) often play an important role in caring for people at the end of life. Although some international studies suggest that GPs experience numerous barriers to providing palliative care, little is known about views and experiences of GPs in Australia. This study explored Australian GPs' perceptions of barriers and enablers to the provision of palliative care and provides new insights into how to implement best practice care at the end of life. This was a qualitative study using 25 semistructured phone interviews conducted with GPs practicing in metropolitan and nonmetropolitan New South Wales, Australia. Data were analyzed using qualitative content analysis. Results demonstrated that GPs reported difficulties with palliative care provision due to (1) the complex and often emotional nature of doctor–family interaction, (2) a lack of evidence to guide care, and (3) the need to negotiate roles and responsibilities within the health care team. GPs listed a number of strategies to help deal with their workload and to improve communication processes between health care providers. These included appropriate scheduling of appointments, locally tailored mentoring and further education, and palliative care guidelines that more clearly outline the roles and responsibilities within multidisciplinary teams. GPs also noted the importance of online platforms to facilitate their communication with patients, their families, and other health care providers, and to provide centralized access to locally tailored information on palliative care services. GPs suggested that nongovernment organizations could play an important role by raising awareness of the key role of GPs in palliative care provision and implementing an “official visitor” program, that is, supporting volunteers to provide peer support or respite to people with palliative care needs and their families. The authors conclude that their study offers new insights into strategies to overcome well-documented barriers to palliative care provision in general practice and help implement optimal care at the end of life. The results suggest that researchers and policy makers should adopt a comprehensive approach to improving the provision of palliative care that tackles the array of barriers and enablers identified in this study.
Burles M, Holtslander L, Peterneli-Taylor C: Palliative and hospice care in correctional facilities: Integrating a family nursing approach to address relational barriers. Cancer Nurs 2019 [E-pub ahead of print]; DOI: 10.1097/NCC.0000000000000754.
The need for palliative and hospice care for persons with life-limiting conditions who are incarcerated is increasingly common in correctional facilities worldwide. Through a family nursing viewpoint, the authors critically analyzed the unique challenges experienced by those requiring palliative care while incarcerated. The method used was case scenario. The case scenario was developed based on the findings of a scoping review of academic and gray literature (such as policy documents and editorials) about palliative, hospice, and end-of-life care in corrections. Results demonstrated that utilizing the case scenario, multilevel barriers were identified, including the individual, relational, institutional, and sociocultural contexts of palliative care in correctional facilities. The authors present evidence of how integration of a family nursing perspective can enhance specialized palliative and hospice care services in correctional settings. The authors conclude that by applying a family nursing approach, nurses practicing with correctional populations can ensure persons with life-limiting illnesses are not denied their right to appropriate end-of-life care by playing a key role in addressing barriers to palliative and hospice care access in corrections. Specific attention to relational issues and holistic care can contribute to enhanced palliative and hospice care, greater dignity in dying, and improved family and peer outcomes, which have benefits for individuals, families, communities, and society.
Sansom-Daly UM, Wakefield CE, Patterson P, et al.: End-of-life communication needs for adolescents and young adults with cancer: Recommendations for research and practice. J Adolescent Young Adult Oncol 2019 [E-pub ahead of print]; DOI: 10.1089/jayao.2019.0084.
A growing evidence base highlights the negative impact of poor psychosocial care at end of life. Adolescents and young adults (AYAs) 15–39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best practice care and communication practices with AYAs as they approach the end of life. The authors conducted a narrative review and found that evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. The authors highlight a number of best practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA–parent preferences exists, and when AYAs die at home versus in hospital. The authors propose a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Graetz D, Fasciano K, Rodriguez-Galindo C, et al.: Things that matter: Adolescent and young adult patients' priorities during cancer care. Pediatr Blood Cancer 2019 [E-pub ahead of print]; DOI: 10.1002/pbc.27883.
AYAs experience cancer while balancing emerging identity and life goals. The authors investigated AYAs' priorities during cancer, including psychosocial concerns, cure-directed therapy, and potential late effects. They surveyed 203 cancer patients aged 15–29 years treated at Dana-Farber Cancer Institute, Boston, Massachusetts, and their oncologists. Patients were approached and rated the importance of aspects of treatment, outcomes, and life during therapy. Response options were “extremely,” “very,” “somewhat,” “a little important,” or “not at all important.” Ratings of “extremely” or “very important” were used as indicators of strong priorities. Results demonstrated that patients' three most frequent priorities were cure (97%), being good to the people they care about (95%), and having supportive people around them (94%). Most prioritized being with family (90%), returning to school/work (89%), maintaining relationships with friends (88%), and feeling normal (85%). Fewer prioritized minimizing long-term (78%) and acute side effects (68%) and fertility (59%). Many participants (88%) said that cure influenced their decisions “a great deal,” whereas fewer were influenced by side effects (32%), fertility (36%), or relationships (16%). Most patients (85%) thought their oncologist understood what was most important to them when treatment started. The authors conclude that nearly all AYA cancer patients prioritize cure, while maintaining social relationships and a sense of normalcy. These priorities influence decisions they make about treatment to differing degrees, with cure influencing decision making for most patients. Although the priority of cure is well established, recognizing other AYA priorities allows providers to optimally support these patients from the time of diagnosis.