Social workers provide unique knowledge and psychosocial skills for seriously ill patients and their family. Clinicians often collaborate with social workers when caring for seriously ill patients. In fact, the Medicare Hospice Benefit and the National Consensus Project (NCP) for Quality Palliative Care state that social workers are a core member of a hospice or palliative care (PC) interdisciplinary team (IDT). This Fast Fact will discuss the role of the hospice and palliative care social worker.
BACKGROUND: The coronavirus disease 2019 pandemic has led to escalating infection rates and associated deaths worldwide. Amid this public health emergency, the urgent need for palliative care integration throughout critical care settings has never been more crucial.
OBJECTIVE: To promote palliative care engagement in critical care; share palliative care resources to support critical care nurses in alleviating suffering during the coronavirus disease 2019 pandemic; and make recommendations to strengthen nursing capacity to deliver high-quality, person-centered critical care. Methods Palliative and critical care literature and practice guidelines were reviewed, synthesized, and translated into recommendations for critical care nursing practice.
RESULTS: Nurses are ideally positioned to drive full integration of palliative care into the critical care delivery for all patients, including those with coronavirus disease 2019, given their relationship-based approach to care, as well as their leadership and advocacy roles. Recommendations include the promotion of healthy work environments and prioritizing nurse self-care in alignment with critical care nursing standards.
CONCLUSIONS: Nurses should focus on a strategic integration of palliative care, critical care, and ethically based care during times of normalcy and of crisis. Primary palliative care should be provided for each patient and family, and specialist services sought, as appropriate. Nurse educators are encouraged to use these recommendations and resources in their curricula and training. Palliative care is critical care. Critical care nurses are the frontline responders capable of translating this holistic, person-centered approach into pragmatic services and relationships throughout the critical care continuum.
BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
Background: People living with head and neck cancer frequently encounter challenges in their treatment with multimodality therapy and risk of side effects. Ensuring access to and use of interdisciplinary supportive and palliative care is often challenging given the complex needs and unfamiliar treatment experiences.
Objectives: Describe the CARE Clinic Plus ONN Gate Opener as an approach to enhance access to and utilization of interdisciplinary supportive and palliative care for people living with head and neck cancer.
Discussion: The Cancer Appetite and Rehabilitation (CARE) Clinic model offers interdisciplinary supportive and palliative care to patients at risk, including those living with head and neck cancer. The oncology nurse navigator (ONN) serves as gate opener, ensuring that those individuals receive appropriate assessment with personalized education and referrals for timely prehabilitation, rehabilitation, and palliation.
Conclusions: The ONN, as a gate opener for people living with head and neck cancer, offers an innovative approach to elevate the patient experience and improve clinical outcomes through interdisciplinary supportive and palliative care when working in collaboration with the CARE Clinic. Guidance for other centers to adapt our model to meet their patient and family needs concludes our discussion.
Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.
Background: Transitioning from the hospital to community is a vulnerable point in patients' care trajectory, yet little is known about this experience within the context of palliative care. While some studies have examined the patient and caregiver experience, no study to date has synthesized the literature on the healthcare provider's perspective on their role and experience facilitating these transitions.
Aim: The purpose of this systematic review was to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings.
Design: A qualitative systematic review of studies using thematic analysis as outlined by Thomas and Harden. PROSPERO: ID # CRD42018109662.
Data sources: We searched four databases: MEDLINE, Embase, ProQuest and CINAHL for studies published in English from 1995 until May 22, 2020. Four reviewers screened records using the following selection criteria: (1) peer-reviewed empirical study, (2) adult sample, (3) qualitative study design, (4) perspective of healthcare providers, and (5) included a component of transitions between acute to community-based palliative care. Study findings were analyzed using thematic analysis which entailed: (1) grouping the findings into recurring themes; (2) iteratively referring back to the articles to obtain nuances of the theme and quotations; and (3) defining and solidifying the themes.
Results: Overall 1,791 studies were identified and 15 met inclusion criteria. Studies were published recently (>2015, n = 12, 80%) and used a range of qualitative methods including semi-structured interviews, focus groups, and field interviews. Three core themes related to the role and experience of healthcare providers were identified: (1) assessing and preparing for transition; (2) organizing and facilitating the logistics of transition; and (3) coordinating and collaborating transitional care across sectors. The majority of studies focused on the discharge process from acute care; there was a lack of studies exploring the experiences of healthcare providers in the community who receive patients from acute care and provide them with palliative care at home.
Conclusion: This review identified studies from a range of relatively high-income countries that included a diverse sample of healthcare providers. The results indicate that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision.
Les infirmiers peuvent apporter une aide à la décision dans les situations d’urgence lors d’un choc septique, notamment si le malade n’a pas rédigé de directives anticipées et/ou désigné une personne de confiance. Ils peuvent entreprendre ou faciliter la collégialité des décisions nécessaires sur le plan juridique et éthique. Les habitus d’une équipe à la réflexion éthique et au recueil de données initial sont les garants du respect de la parole du patient.
OBJECTIVE: Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers' views on their main needs, roles, and ethical concerns regarding cancer family history discussions.
METHOD: The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted.
RESULTS: Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients' concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members.
SIGNIFICANCE OF RESULTS: Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers' needs might help optimize cancer predisposition management in palliative care.
Staff reported paranormal experiences in connection with the outpatient Medical Assistance in Dying (MAiD) room at the hospital. This case study reports on staff experiences and illustrates how the Ethics team’s role expanded to deal with this novel situation by facilitating an interdisciplinary response.
New methods of working in relation to the management of patients requiring palliative radiotherapy are being embraced in hospital departments around the world. Team members are expanding on their previously assigned scope of practice to take on duties that had previously only been assigned to a consultant clinical oncologist. Career frameworks such as the four-tier model have been built upon to identify the skills held by other healthcare professionals and show how they may be best placed to take on additional roles within a patient pathway. Experiences of four departments in different countries report their local experiences in using both therapeutic radiographers and nursing staff to undertake advanced and consultant-level practice in relation to the management of both palliative radiotherapy patients and their research work streams. Involvement of other healthcare professionals within the clinical or research pathway for the management of palliative radiotherapy patients can be achieved. Their involvement can support clinicians and help to ensure the safe and efficient management of patients requiring palliative radiotherapy.
AIM: To better understand the participation of nursing staff in end-of-life nutrition and hydration decision-making in an American nursing home.
DESIGN: A qualitative exploration with ethnographic focus.
METHODS: In April 2017, in-person, semi-structured interviews were performed with 19 nursing staff members in a nursing home located in the south-eastern United States. Additional information was gathered through participant observation during interviews and review of organizational and regulatory policies. Transcripts were coded and analysed using qualitative methods described by Roper and Shapira (2000).
RESULTS: Three primary themes relating to nursing staff participation in end-of-life nutrition and hydration decision-making were identified: (a) Formal decision-making: decisions made and implemented by persons with the authority to make legal and binding care decisions in the nursing home setting; (b) Informal decision-making: decisions not requiring medical orders; and (c) Influential factors: factors that influence actions of nursing staff.
CONCLUSION: A variety of factors have an impact on nursing staff participation in end-of-life nutrition and hydration decision-making. Participation is closely aligned with the type of decision, whether formal or informal, and role, whether Certified Nursing Assistant/Aide, Licensed Practical/Vocational Nurse, or Registered Nurse.
IMPACT: End-of-life nutrition and hydration decision-making in nursing homes differs from decision-making in other care settings and presents a challenge globally. Interventions that support the participation of nursing staff in end-of-life nutrition and hydration decision-making have the potential to positively impact the experiences of residents and family members faced with these issues in the nursing home setting.
OBJECTIVE: Volunteers are an important resource in bridging palliative care (PC) services and communities. However, no studies have systematically mapped volunteers' actual contributions to PC provision and how well they are supported by healthcare services at the volunteer level. Such insights are important to shape and optimise supportive environments for volunteering in PC. This study aimed to describe organised volunteering practices in PC across dedicated PC services and healthcare services providing generalist PC, in terms of tasks, training, supervision and how volunteers evaluate these.
METHODS: A cross-sectional postal survey of 2273 volunteers from healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium) was conducted between June and November 2018. A two-step cluster randomised sample was used. Volunteers were recruited through their respective volunteering organisations.
RESULTS: Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (70.8%) and aged 60-69 years (43.4%). Almost all volunteers provided psychosocial care (96.3%). Volunteers were found to provide either (1) broad volunteer support, emphasising psychosocial and existential care and signposting tasks or (2) narrow volunteer support, emphasising nursing care tasks. Nursing home volunteers had the lowest prevalence of PC training (7.7% vs 53.7% total, p<0.001).
CONCLUSIONS: Multidimensional support was most prevalent among dedicated PC volunteers, while practical support was most prevalent among sitting service volunteers. Results indicate that volunteers can offer complementary support for patients with serious illnesses, although this requires training and consistent supervision. This is currently suboptimal for volunteers in nursing homes and community home care.
Globally, the number of older people requiring appropriate and safe management of medicines is growing. This review aimed to identify the roles and responsibilities of pharmacists supporting older people living in a community setting with their palliative care needs and to synthesise key themes emerging from the data, as well as any gaps in knowledge. The literature search included Medline (Ovid), Scopus, and Cinahl (Ebsco) databases. An English language limit was applied. The search included all international articles and any date of publication. Data were synthesised utilizing a systematic text condensation technique and presented according to Theme, Domain, and Meaning Units. Fourteen studies met the inclusion criteria. Selected papers predominantly focused on care provided by the pharmacists supporting people receiving residential aged care services. Clinical review, supply of medicines, and clinical governance were identified as key pharmacist roles. Pharmacists' communication skills, personal behavioural approach, and positive attitude emerged as supportive characteristics for effective person-centered care. Minimal, or no information, were available related to pharmacists located in general medical practices and in Aboriginal health services sector, respectively. The multifaceted role of pharmacists presents an opportunity to provide comprehensive health care for older populations at the end of their life.
AIM(S): A review of the global literature on the implementation of Advanced Healthcare Directives to date, and of the experiences of the healthcare professionals who must initiate the discussions around advance care planning, as well as support patients' ultimate decisions.
BACKGROUND: Ireland's Assisted Decision-Making (Capacity) Act 2015 legalises Advance Healthcare Directives. It promotes the autonomy of the person and enables them to have treatment in accordance with their will and preferences. However, there is professional uncertainty on how to support and integrate assisted decision-making.
EVALUATION: 16 studies featuring the views of healthcare professionals are included and evaluated using a framework of 'benefits versus challenges'.
KEY ISSUE(S): Four themes clearly emerge during the review process: the concept of capacity and who decides; autonomy vs paternalism - conflict among the healthcare professional/patient/family-carer triad; barriers to advance directives; and timing issues.
CONCLUSION(S): Significant benefits of advance healthcare directives exist for all parties including less stress for patients and families alike, less burden and less residual guilt for surviving relatives, and an over-arching prevention of 'crisis' decision-making.
IMPLICATIONS FOR NURSING MANAGEMENT: This review highlights the central role of the nurse in empowering patients to express their wills and preferences, supporting patients' capacity to make decisions about their own care, initiating end-of-life care discussions and advocating to have advance healthcare directives acknowledged. Moreover, it identifies the challenges ahead for all nurse managers in implementing this new mandate.
Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
With the daily number of confirmed COVID-19 cases and associated deaths rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and other consequences of the health care crisis. Comprising more than half of the global health care workforce and the highest proportion of direct patient care time than any other health professional, nurses are at the forefront of this crisis. Throughout the evolving COVID-19 pandemic, palliative nurses will increasingly exercise their expertise in symptom management, ethics, communication, and end-of-life care, among other crucial skills. The literature addressing the palliative care response to COVID-19 has surged, and yet, there is a critical gap regarding the unique contributions of palliative nurses and their essential role in mitigating the sequelae of this crisis. Thus, the primary aim herein is to provide recommendations for palliative nurses and other health care stakeholders to ensure their optimal value is realized and to promote their well-being and resilience during COVID-19 and, by extension, in anticipation of future public health crises.
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.
The large scale and rapid spread of the current COVID-19 pandemic has changed the way hospitals and other health services operate. Opportunities for patient-centered decision-making at the end of life are being jeopardized by a scarcity of health system resources. In response, the traditional doctor-initiated advanced care planning (ACP) for critical illness may also need to be readjusted. We propose nurse-led and allied health-led ACP discussions to ensure patient and family inclusion and understanding of the disease prognosis, prevention of overtreatment, and potential outcomes in crisis times. We highlight known barriers and list enablers, long-term and short-term opportunities to assist in the culture change.
District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning.
In this paper, we strongly advocate for universal palliative care access during the COVID-19 pandemic. The delivery of universal palliative care services has been called for by leading global health organizations and experts. Nurses are critical to realizing this goal. COVID-19 diagnoses and fatalities continue to rise, underscoring the importance of palliative care, particularly in the context of scant resources. To inform the writing of this paper, we undertook a review of the COVID-19 and palliative care literature and drew on our experiences. It is very clear that investment in nurses is needed to ensure appropriate palliative care services now and into the future. Avoiding futile interventions and alleviating suffering is an ethical imperative for nurses regardless of the setting. Multi-level practices and policies to foster the delivery of safe, high-quality palliative care for all are urgently needed.