How specialist palliative care nurses identify patients with existential distress and manage their needs

2019 ◽  
Vol 25 (5) ◽  
pp. 233-243 ◽  
Author(s):  
Zara Fay ◽  
Colm OBoyle

Background: Existential distress is a term used when patients who are coming towards the end of their lives exhibit profound suffering, related particularly to their thoughts on life and existence. The clinical expression of this phenomenon has not been widely researched, and so specialist palliative care nurses were asked how they identify and manage this patient cohort. Aims: To explore how palliative-care nurses identify patients with existential distress and manage their needs. Methods: A qualitative descriptive design with thematic content analysis of transcribed interviews. Findings: Behavioural changes, agitation, social withdrawal and communication difficulties are identified as indicators of possible existential distress. Susceptible patient groups are identified. Nurses acknowledged that caring for patients with existential distress can be emotionally demanding. Being present and building relationships with patients are identified as enabling meaning-making. Sedation for refractory distress is seen as a last resort. Conclusion: Early identification of existential distress by carers could enable timely intervention (counselling, psychotherapy and or spiritual guidance) to improve the patients' quality of life in the terminal phase of their illness and avoid intractable or refractory existential distress that may necessitate palliative sedation.

Author(s):  
Jayne Wood ◽  
Maureen Carruthers

Specialist palliative care services originally focused on improving the quality of life for patients with a diagnosis of cancer in the terminal phase of their illness. However, organizations, such as the World Health Organization, supported by recent national strategies, such as the End of Life Care Strategy (United Kingdom, 2008), promote the early integration of specialist palliative care into the management of patients with incurable disease, irrespective of the diagnosis. The primary goal of the intensive cardiac care unit is to help patients survive acute threats to their lives. However, the suddenness and severity of illness, particularly when associated with an underlying cardiological diagnosis, often means that the provision of optimal specialist palliative care is challenging. This chapter addresses key issues relating to the provision of specialist palliative care in the challenging and complex environment of the intensive cardiac care unit, including symptom control, end of life care, decision making, and communication. The benefits of multidisciplinary working for effective quality improvement in patient care and best support for patients, families/carers, and staff are also addressed. The importance of interdisciplinary working is highlighted, and, by embedding the principles of holistic care into daily practice, the intensive cardiac care unit can ensure that patients and their families/carers receive the support they need in a timely manner from individuals who are well supported in what is often considered to be one of the most challenging medical environments.


2020 ◽  
Vol 10 (2) ◽  
pp. 209-212
Author(s):  
Nicola White ◽  
Fiona Reid ◽  
Victoria Vickerstaff ◽  
Priscilla Harries ◽  
Patrick Stone

ObjectivesResearch suggests that clinicians are not very accurate at prognosticating in palliative care. The ‘horizon effect’ suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to die within 72 hours.DesignIn a secondary data analysis of a prospective observational study, specialist palliative care doctors and nurses (in a hospice and a hospital palliative care team) provided survival predictions (yes/no/uncertain) about which patients would die within 72 hours.ResultsSurvival predictions were obtained for 49 patients. A prediction from a nurse was obtained for 37/49 patients. A prediction from a doctor was obtained for 46/49 patients. In total, 23 (47%)/49 patients actually died within 72 hours of assessment. Nurses accurately predicted the outcome in 27 (73%)/37 cases. Doctors accurately predicted the outcome in 30 (65%)/46 cases. When comparing predictions given on the same patients (27 [55%]/49), nurses were slightly better at recognising imminent death than doctors (positive predictive value (the proportion of patients who died when the clinician predicted death)=79% vs 60%, respectively). The difference in c-statistics (nurses 0.82 vs doctors 0.63) was not significant (p=0.13).ConclusionEven when patients are in the terminal phase and close to death, clinicians are not very good at predicting how much longer they will survive. Further research is warranted to improve prognostication in this population.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.


Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2670
Author(s):  
Moira O’Connor ◽  
Greta Smith ◽  
Ashleigh Pantaleo ◽  
Darren Haywood ◽  
Rhys Weaver ◽  
...  

Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.


2021 ◽  
Author(s):  
Kirsty Thorpe ◽  
Jamie McKnight ◽  
Hildegard Kolb ◽  
Claire McCullough ◽  
Tim Morgan

Sign in / Sign up

Export Citation Format

Share Document