The patient who enters at the intensive care unit (ICU) usually does because of health conditions that are sometimes irreversible and lead to death, and the care at the end of life becomes the main factor of this situation; therefore, the aim of this article was to understand the meaning of the experience of giving care to families at the end of life in an ICU. For this reason, a qualitative, hermeneutic phenomenological research was carried out. For the data collection, a semi-structured interview was conducted to 18 participants, and the results were returned to each of the participants in order to validate each of the categories and interpretations. Among these results, two main categories were identified: emotional response of the nurse to the family and nursing care to the family of patients at the end of life. It was concluded that the nurses working at the ICU are facing aspects related to the end of life that generates emotional and psychological burden; additionally, they do not have specific training in this subject, especially in relation to the care of the families in this situation, for which they provide this care based on empiricism.
RESEARCH QUESTION: How does the process of engagement and integration of sources of information outside patient-physician interaction affect how individuals with cancer interpret their treatment experience and prognosis?
BACKGROUND: Studies of patient-physician communication of prognosis in oncology highlight areas where misunderstanding occurs: understanding consequences of treatment, likelihood of treatment success, probability of cure, status/progression of illness, and prognosis. Theories proposing mechanisms that underlie this discrepancy cannot account for all instances of misunderstanding, including when complete and direct physician disclosure occurs. Prior research focused on patient-physician communication event(s) and immediate antecedents and consequences. However, less is known about what happens to information once it has been communicated and how a patient's process to interpret the meaning of their experience affects their understanding of it. Our study explores this question by examining patient communication with sources of information other than treating physicians.
METHODOLOGY: We conducted 10 semi-structured qualitative interviews with individuals diagnosed with 4 types of cancer at different stages. The interviews were analyzed using inductive qualitative analysis.
RESULTS: Participants in our sample consulted a variety of additional sources to give context and understanding to their communicated prognosis. These were important contributors to how they understood their prognosis and incorporated that understanding. They included family, friends/acquaintances, cancer survivors, support/survivor groups, secondary health-care staff, and relevant informational materials. Different motivations for seeking out these sources were also expressed. Participants expressed a link between their understanding of their prognosis and the variety of outside sources they enlisted for input and support.
OBJECTIVE: This article sought to explore ethical issues associated with prioritization decisions in palliative care.
METHODS: As part of a broader series of studies of triage in palliative care, this qualitative substudy was conducted via semi-structured focus groups and individual interviews. Transcripts were subjected to thematic analysis.
SETTING/PARTICIPANTS:: Twenty health professionals working across disciplines (primary, specialist; medicine, nursing, and allied health), service types (inpatient, hospital liaison, and community), and locations (metropolitan and rural) in Victoria, Australia.
RESULTS:: Four themes emerged from the data: (1) Clinicians understood the tension between maintaining service quality with the delivery of a compromised service that sought to respond to demand. (2) They were aware of the influences of relationships and responsibilities upon patient waiting list prioritization, and (3) reported a hierarchy of suffering with certain types of clinical problems viewed as more urgent than others, for example, pain being more urgent than existential distress. (4) Clinicians noted a lack of transparency around waiting lists as they currently exist.
CONCLUSIONS: This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. Making explicit the processes and influences upon decision-making provides greater transparency of health-care utilization at the end of life.
To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.
BACKGROUND: With the rapid growth in the number of fellowship programs in Hospice and Palliative Medicine (HPM), many are in the process of developing ways to demonstrate that fellows are attaining educational milestones. Reflection and self-assessment are key components of 2 Accreditation Council for Graduate Medical Education (ACGME) competencies, practice-based learning and improvement, and systems-based practice, which have both been historically challenging to learn and assess.
OBJECTIVE: This article describes results of a content analysis of narrative data collected from HPM fellows' self-assessments as they performed hospice home visits independently in a new clinical rotation.
DESIGN: This was a prospective qualitative study.
SETTINGS/PARTICIPANTS: Eight fellows completed 217 unsupervised hospice home visits from 2014 to 2016.
MEASUREMENTS: Fellows completed weekly self-assessment forms, which captured both clinical visit information and practice data elicited from responses to open-ended reflection prompts.
RESULTS: Analysis of 29 self-assessment forms generated 6 themes: patient- and family-centered care, self-efficacy, systems-based care, commitment to doing their best, catalyst for professional growth, and purpose and meaning in work. The fellows recognized numerous barriers distinct to providing care in homes. All fellows felt prepared to perform home visits throughout the rotation and after training.
CONCLUSIONS: Narrative data collected during the independent home visit rotation provided evidence that HPM fellows detected gaps in their performance, planned for practice improvements in subsequent visits, and valued working within an interprofessional team. Built-in opportunities for fellows to reflect during training are critical in meeting ACGME milestones, and are integral to their professional development.
Despite the frequency, complexity, and intensity of communication that occurs between nurses, patients, and families, palliative care nurses often struggle with end-of-life communication. The primary goal of this quality improvement project was to increase nurse confidence and satisfaction engaging in end-of-life communication following the implementation of the COMFORT model; the secondary goal was to improve patient-family satisfaction with care provided in the palliative care unit. Fourteen palliative care nurses attended a 4-hour course to learn the tenets of the COMFORT model and practice through role-play exercises. A repeated-measures design was used to measure nurse confidence and satisfaction precourse, postcourse, and 3 months postcourse. A between-subjects pre-post design was used to compare family satisfaction survey scores in the 3-month period before versus the 3 months after implementation. Analysis revealed a statistically significant increase in all measures of nurse confidence and satisfaction from precourse to postcourse and from precourse to 3 months postcourse. There was no statistical difference between the family satisfaction survey scores before versus after training, although survey results were generally high at baseline and most respondents rated palliative services with the best possible response. This project demonstrates that COMFORT model training increased confidence and satisfaction of palliative care nurses engaged in end-of-life communication and demonstrates potential for use in other clinical areas that do not specialize in end-of-life nursing (eg, critical care) but find themselves in need of the communications skills to address end-of-life care.
The aim of this study was to explicate ways in which parents tell their adolescents about a parent's death. This study used a descriptive, qualitative design. From a large hospice in northeastern Ohio, nine adolescent children and six surviving spouses of recently deceased hospice patients were recruited. Participants completed a demographic questionnaire and a semistructured individual interview. Thematic content analysis techniques were used to analyze the data. Surviving parents tell adolescents about the parent's death in ways that are intended to inform and ease the adolescents' distress. They engage in the process of disclosure in one of three ways: measured telling, matter-of-fact telling, and inconsistent telling. Findings from the current study are consistent with the ways parents told their children about an ill parent's life-threatening illness and imminent death. The findings support a framework that describes the processes of disclosure of a parent's illness, imminent death, and death to their adolescent children. Predeath findings about telling foreshadowed the postdeath findings. These results can be used to inform the development of interventions in which nurses and other health care professionals assist families with disclosure before and after death by tailoring strategies according to the family's communication style.
BACKGROUND: Nurses in inpatient palliative care are frequently exposed to death and dying in addition to common stressors found in other nursing practice. Resilience may mitigate against stress but remains ill-defined and under-researched in the specialist palliative care setting.
OBJECTIVE: The aim of this systematic review was to understand resilience from the perspectives of inpatient palliative care nurses.
DESIGN: A thematic synthesis of qualitative studies was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
DATA SOURCES: Academic Search Ultimate, Cumulative Index to Nursing and Allied Health Literature, Medline Complete, PsycINFO and Scopus.
REVIEW METHODS: The review stages were searching for relevant literature, selecting relevant papers, data extraction, critical appraisal and thematic synthesis.
RESULTS: Eight studies revealed 10 subthemes, 3 descriptive themes and 1 analytical theme: resilience occurs when nurses incorporate stressful aspects of their personal or professional lives into a coherent narrative that enhances their ability to cope with the demands of their role.
CONCLUSION: Palliative care nursing is more stressful if patients or situations remind nurses of personal experiences. Nurses cope better with adequate support; however, coping does not necessarily imply increased resilience. Resilience occurs when nurses cognitively process their experiences, articulate their thoughts and feelings into a coherent narrative, and construct a sense of meaning or purpose. Future research could explore how nurses understand resilience and how it could be enhanced in the palliative care inpatient setting. With resilience, nurses may remain in the profession longer and improve the quality of care when they do.
OBJECTIVES: Early palliative care leads to meaningful improvements in physical and psychosocial symptoms, as well as quality of life, in patients with advanced cancer. Patients with haematological malignancies, despite a high level of distress, continue to have less access to palliative care services. The aim of this study was to identify haematologists' perceptions of palliative care, as well as barriers to patient referral.
METHODS: We used a qualitative grounded theory methodology. Twenty-four medical haematologists involved in clinical practice from two French centres in Lyon-the Lyon Sud University Hospital and the Léon Bérard Cancer Center-were included. The interview guide questions aimed to establish the clinical situations which triggered referral to palliative care and how participants perceived palliative care.
RESULTS: Data saturation was reached after 14 interviews. The data analysis highlighted four themes. The aim of palliative care was clearly identified as alleviating severe suffering. Palliative care was identified as a separate specialty, and respondents expressed the need for collaboration. Early intervention was perceived as beneficial to avoid certain situations such as hospitalisation or emergency department visits at the end of life. The main barrier to palliative care referral remained the negative connotations associated with the term 'palliative', which was overwhelmingly associated with the end of life.
SIGNIFICANCE OF RESULTS: Our results suggest that the principal barrier to palliative care referral is the term 'palliative care'; haematologists would prefer 'supportive care' instead.
What matters at the end of life (EOL) among the older population in Denmark is poorly investigated. We used focus groups and in-depth interviews, to identify perspectives within the EOL, along with what influences resuscitation, decision making, and other treatment preferences. We included eligible participants aged =65 years in the Region of Southern Denmark. Five focus groups and nine in-depth interviews were conducted, in total 31 participants. We found a general willingness to discuss EOL, and experiences of the process of dying were present among all participants. Three themes emerged during the analysis: (a) Being independent is crucial for the future, (b) Handling and talking about the EOL, and (c) Conditions in Everyday Life are Significant. Life experiences seemed to affect the degree of reflection of EOL and the decision-making process. Knowing your population of interest is crucial, when developing an approach or using an advance care plan from another setting.
Introduction: Stroke is the development of a focal neurological disturbance lasting >24 h, of vascular origin. In India, stroke is one of the leading causes of morbidity and mortality. Most stroke patients, during their duration of treatment and posthospitalization, want relief of suffering, a sense of control and minimized burden on the family.
Aim: The aim of this study is to describe treating doctors' perspectives on the palliative needs of stroke patients in India.
Methodology: This qualitative study was conducted at a tertiary care hospital in South India. A total of 17 doctors involved in the care of stroke patients were interviewed, using an interview guide. The interviews were audio recorded simultaneously. The audio recording was transcribed verbatim, and the data were coded using a grounded theory approach. An inductive approach using thematic analysis was used to manually analyze the data.
Results: Eight themes emerged. (1) Functional disability: loss of independence due to immobility, speech deficits, visual disturbances, feeding difficulties, and incontinence cause immense distress. (2) Physical burden: pain in the form of central poststroke pain, periarthritic shoulder, psychogenic pain, and various sequela of chronic bed bound state like bed sores and pneumonia add to the burden. (3) Psychological needs: depression is common in stroke patients along with other psychological issues such as anxiety, agitation, apathetic state, and behavioral disturbances (4) Social issues: Cost of treatment of stroke patients coupled with their loss of employment leads to huge economic burden. They also face abandonment by children or spouse, in all sections of socioeconomic strata. (5) Caregiver burden: caregiver has a major role in a setting of stroke and in the long-term affects all domains of their lives, compromising their psychological and physical health. (6) Counseling-an unmet need: counseling is particularly important in a setting of stroke for the patient as well as the caregivers and results in a better patient outcome. However, clinicians expressed that it was inadequate due to the huge patient load, time constraints, and lack of effective counseling skills. (7) Spiritual needs: few clinicians stated that existential distress and spiritual struggle are seen in debilitated stroke victims and are often unaddressed. (8) Issues at the end of life care: patients with massive stroke, multiple comorbidities, and poor rehabilitative potential requires end of life care.
Conclusions: From the interviews of the clinicians, we can conclude that care of a stroke patient is more than medical management and rehabilitation, as several other aspects of the patient's life are affected by the condition. The quality of life aspect has to be looked upon as an area that requires active intervention in a setting of stroke. Physical disabilities were viewed as the most significant factor in reducing the quality of life. Spiritual needs have a low priority in comparison to other physical needs. Due to high patient load and time constraints, many of the needs are unaddressed. Two important areas where palliative medicine has a major role in a setting of stroke are counseling and alleviating caregiver burden. However, referral of stroke patients to palliative medicine is low and further research to identify barriers to specialist palliative care of stroke patients will help in promoting the referrals to palliative medicine.
Context: Spirituality is the essence of a human being. Patients who have good spiritual well-being (SWB) will also have better quality of life. However, health-care providers usually under-assess this aspect due to lack of practical guideline. In Thailand, the validated survey came from a different cultural background and was heavily based on Buddhism approach.
Aims: The aim of the study is to assess the meaning of spirituality and SWB in Thai breast cancer patients in Southern Thailand where people have more diverse cultural and religious background.
Settings and Design: Descriptive qualitative phenomenology design.
Subjects and Methods: In-depth interview with stratified purposive sampling method. The interviews took place in the oncology outpatient unit department and participants' home. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, able to communicate in Thai, has a Palliative Performance Scale more than 50, and was not diagnosed with any psychological disorder.
Statistical Analysis Used: Descriptive statistic.
Results: From October 2016 to February 2018, 16 women joined the study. Three themes emerged with five subthemes: (1) feeling life worthwhile, (2) sense of belonging in the community, and (3) feeling connected to the nature.
Conclusions: For Thai women, who have breast cancer, their spirituality focuses on family, mainly their children. They also have better SWB if they have good family relationship, social support, or feeling connected with nature or higher being in a religious or nonreligious way. Future survey design needs to be broader in a secular view and on another perspective rather than the religious approach.
An unexplored aspect of conflicts and conflict resolution in the ICU at EOL is the role of advocacy in both medicine and law.
GOAL: Qualitative study to explore perspectives of SDM/patient lawyers on issues of advocacy at EOL to better understand conflicts and resolution processes.
METHODS: Purposive sampling with criterion and snowball techniques were used to recruit 11 experienced lawyers for semi-structured interviews. Interviews explored respondents' beliefs, views, and experiences with conflicts; were audio-recorded, coded inductively and iteratively following interpretive analysis. Recurring themes were identified using NVivo Qualitative Software.
RESULTS: We interviewed 11 participants and achieved conceptual saturation. Participants identified insufficient advocacy and overaggressive advocacy as major contributors to the initiation of ICU conflicts and the inhibition of resolution processes before and after the legal system is engaged. These breakdowns in advocacy contribute to challenges when conflicts arise, leading to prolongation of conflict-resolution processes and to outcomes that sometimes reflect the goals of legal advocacy rather than patient-centred goals.
CONCLUSION: This study explores legal perspective of conflict at EOL and how these perspectives can be used to inform the development of better approaches to conflict resolution.
BACKGROUND: The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals.
OBJECTIVE: Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home.
METHODS: This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology.
RESULTS: A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions.
CONCLUSIONS: Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.
BACKGROUND: Advance care planning (ACP) can offer benefits to patients and their families, especially when delivered in outpatient settings, but uptake remains low. Common barriers for health professionals include a perceived lack of time and adequate training, experience, and confidence in conducting ACP. Patient-reported barriers include a lack of awareness of ACP or discomfort initiating or engaging in discussions about end-of-life.
METHODS: We aimed to explore patients' perspectives of an ACP intervention designed to address common barriers to uptake in the general practice setting. We provided training and support to doctors and general practice nurses (GPNs) to initiate and lead ACP discussions at their respective practices (2014 to 2015). Following the intervention, we conducted interviews with patients to explore their experience of engaging in ACP in the general practice setting. Thematic analysis was used to inductively code transcripts and identify key themes from semi-structured interviews with patients.
RESULTS: Six major themes relating to patient experiences of GPN-facilitated ACP were identified: working through ideas, therapeutic relationship with nurses, significance of making wishes known, protecting family from burden, autonomy in decision-making, and challenges of family communication. The patients valued the opportunity to speak about issues that are important to them with the GPN who they found to be compassionate and caring. The patients felt that ACP would lead to significant benefits not only to themselves but also for their family. Despite encouragement to involve other family members, most patients attended the ACP discussions alone or as a couple; many did not see the relevance of their family being involved in the discussions. Some patients felt uncomfortable or reluctant in communicating the results of their discussion with their family.
CONCLUSIONS: With adequate training and support, GPNs are able to initiate and facilitate ACP conversations with patients. Their involvement in ACP can have significant benefits for patients. Psychosocial and relational elements of care are critical to patient satisfaction. Our findings show that some patients may feel uncomfortable or reluctant to communicate the results of their ACP discussions with their family. A future larger study is required to verify the findings of this pilot study.
OBJECTIVES: Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients' thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment.
SETTINGS: Patients with colorectal cancer receiving palliative chemotherapy.
RESEARCH DESIGN: We used a qualitative approach, and the data were analysed by qualitative content analysis.
PARTICIPANTS: 20 patients (34-75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians.
RESULTS: Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory.
CONCLUSION: The participants' experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.
BACKGROUND: The concept of complexity is used in palliative care (PC) to describe the nature of patients' situations and the extent of resulting needs and care demands. However, the term or concept is not clearly defined and operationalised with respect to its particular application in PC. As a complex problem, a care situation in PC is characterized by reciprocal, nonlinear relations and uncertainties. Dealing with complex problems necessitates problem-solving methods tailored to specific situations. The theory of complex adaptive systems (CAS) provides a framework for locating problems and solutions. This study aims to describe criteria contributing to complexity of PC situations from the professionals' view and to develop a conceptual framework to improve understanding of the concept of "complexity" and related elements of a PC situation by locating the complex problem "PC situation" in a CAS.
METHODS: Qualitative interview study with 42 semi-structured expert (clinical/economical/political) interviews. Data was analysed using the framework method. The thematic framework was developed inductively. Categories were reviewed, subsumed and connected considering CAS theory.
RESULTS: The CAS of a PC situation consists of three subsystems: patient, social system, and team. Agents in the "system patient" are allocated to further subsystems on patient level: physical, psycho-spiritual, and socio-cultural. The "social system" and the "system team" are composed of social agents, who affect the CAS as carriers of characteristics, roles, and relationships. Environmental factors interact with the care situation from outside the system. Agents within subsystems and subsystems themselves interact on all hierarchical system levels and shape the system behaviour of a PC situation.
CONCLUSIONS: This paper provides a conceptual framework and comprehensive understanding of complexity in PC. The systemic view can help to understand and shape situations and dynamics of individual care situations; on higher hierarchical level, it can support an understanding and framework for the development of care structures and concepts. The framework provides a foundation for the development of a model to differentiate PC situations by complexity of patients and care needs. To enable an operationalisation and classification of complexity, relevant outcome measures mirroring the identified system elements should be identified and implemented in clinical practice.
BACKGROUND: Little is known of how to organize non-malign palliative care, and existing knowledge show that patients with COPD live with unmet palliative needs and low quality of life. With the intent to improve palliative care for patients with COPD, we changed the structure of our outpatient clinic from routine visits by a pulmonary specialist to a structure where each patient was assigned a nurse, offered annual advance care planning dialogues, and ad hoc pulmonary specialist visits. The aim of this study was to explore COPD patients' experiences with a new and altered palliative organization.
METHODS: The design was interpretive description as described by Thorne. We conducted ten semi-structured interviews with patients with severe COPD from January 2017 to December 2017.
RESULTS: Patients described how the professional relationship and the availability of their nurse was considered as the most important and positive change. It made the patients feel safe, in control, and subsequently influenced their ability to self-manage their life and prevent being hospitalized. The patients did not emphasize the advanced care planning dialogues as something special or troublesome.
CONCLUSION: We showed that it is relevant and meaningful to establish a structure that supports professional relationships between patient, nurse and physician based on patients needs. The new way of structuring the outpatient care was highly appreciated by COPD patients and made them feel safe which brought confidence in self-management abilities.
INTRODUCTION: Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence.
OBJECTIVES: This study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions.
DESIGN: This cross-sectional qualitative study sampled advanced cancer patients (n=10), their family caregivers (n=10) and oncologists (n=10). Grounded theory procedures were utilised to analyse transcripts, and a theoretical model generated.
SETTING: A tertiary teaching hospital in South India.
RESULTS: The model explains how stigma associated with communicating a diagnosis of advanced cancer is enacted by treating oncologists, family members and community. This leads to patient expectations of cure and futile treatment uptake. Patients commonly only present needs with respect to pain, not within psychological, social or spiritual domains, likely due to the lack of patients' insight into their diagnosis and prognosis. As a result of oncologists' and families' unwillingness to disclose the prognosis, and patient focus on pain due to their lack of insight, palliative care clinicians view their services as under-utilised, and patients perceive palliative care as a pain management service that is not 'different' from other clinical services. Advanced care needs and purchase of futile treatments lead to lost employment among families, increased family debt and high care costs, which are rarely disclosed due to their unwillingness to discuss their needs.
CONCLUSION: Our novel theoretical model is an essential first step to ensure that complex interventions are plausible, with mechanisms of action that address the needs of relevant stakeholders. A family-centred approach with an oncology workforce skilled in communication and an enabled patient population could increase access to palliative care, and improved outcomes may be attainable.
OBJECTIVES: The unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.
DESIGN: Individual and small group interviews using process mapping.
SETTING: Data were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.
PARTICIPANTS: Health and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.
METHODS: In this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.
RESULTS: Palliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.
CONCLUSIONS: The changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.