International journal of palliative nursing (Int J Palliat Nurs)

Publications in this journal

• Article: End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service

  Jamilla Hussain, Debi Adams, Colin Campbell
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  ABSTRACT: Background: People with advanced neurological conditions (ANCs) face complex problems and needs that are often unrecognised and undertreated. Their last year of life may be characterised by unplanned hospital admissions and an unexpected death. A National End-of-Life Care Programme (NEoLCP) 2010 framework made recommendations to aid timely and appropriate end-of-life care for people with ANCs. Objectives: Assessment of key outcomes of a UK nurse-led palliative neurology service against the NEoLCP standards. Method: A retrospective study of clinical records of patients who died from an ANC under the care of the service from December 2006 to April 2012. Results: All 62 patients had multidisciplinary care coordinated by a key worker—a clinical nurse specialist (CNS) in palliative neurology. Mental capacity was assessed in 95% of cases, of which 95% had a documented advance care plan or best interest decision. The CNS had specific input regarding carer distress in 77% of cases. Mean hospital admissions were 0.9 per patient in the last year of life, compared with 3.5 nationally across all diagnoses. The service demonstrated better outcomes in other key areas, including place of death, with more patients dying at home or in the hospice compared with national figures. Conclusion: This service model fulfils key NEoLCP recommendations, as well as resulting in low hospital admissions and deaths.
  International journal of palliative nursing 04/2013; 19(4):162.
• Article: Outcomes of a nurse-delivered psychosocial intervention for weight- and eating-related distress in family carers of patients with advanced cancer.

  Jane B Hopkinson, Deborah R Fenlon, Claire L Foster
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  ABSTRACT: Background: International expert consensus is that psychosocial intervention is likely to help advanced cancer patients and their family carers affected by weight loss and poor appetite. Purpose: To investigate the potential for a psychosocial intervention, the Macmillan Approach to Weight and Eating (MAWE), to mitigate weight- and eating-related distress in carers of patients with advanced cancer. Method: A controlled before and after study was conducted with carers of advanced cancer patients living in the community in the South of England in 2006-7. It used mixed methods to compare carers exposed to MAWE (n=12) with a control group (n=14). Results: Weight- and eating-related distress improved in carers exposed to MAWE. Qualitative analysis found that MAWE may help carers by providing information, reassurance, and support for self-management. Conclusion: This preliminary study of MAWE suggests that it provides benefits as a supportive intervention. Further testing is warranted using a more robust experimental design.
  International journal of palliative nursing 03/2013; 19(3):116-23.
• Article: Geriatric rehabilitation for patients with advanced COPD: programme characteristics and case studies.

  Eléonore F van Dam van Isselt, Karin H Groenewegen-Sipkema, Monica Spruit-van Eijk, Niels H Chavannes, Wilco P Achterberg
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  ABSTRACT: Considering the worldwide ageing of populations, there is a growing need for rehabilitation programmes specifically designed for geriatric patients. The authors developed and implemented a post-acute geriatric rehabilitation programme in a skilled nursing facility for patients with advanced chronic obstructive pulmonary disease (COPD)-the GR-COPD programme. This paper describes the characteristics of the programme and presents three case studies to illustrate its possible benefits for individual patients. The case studies show that integration of rehabilitation and palliative care components is essential, as patients with advanced COPD admitted to hospital for an acute exacerbation often suffer from high symptom burden, deteriorating quality of life, and poor prognosis. Development and implementation of a post-acute GR-COPD programme is feasible and can offer substantial benefits for patients with advanced COPD admitted to hospital for an acute exacerbation.
  International journal of palliative nursing 03/2013; 19(3):141-6.
• Article: Making advance care planning in community palliative care possible: Useful conversation starters across the client journey

  Blackford J Street AF
  International journal of palliative nursing 03/2013; 19(3):132-139.
• Article: Cancer pain in Jordan: prevalence and adequacy of treatment.

  Mohammad Al Qadire, Ahmad Tubaishat, Ma En M Aljezawi
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  ABSTRACT: Background: Despite the introduction of numerous guidelines and pharmacological interventions to manage cancer pain, poor assessment and under-medication remain common. Aim: To estimate the prevalence of cancer pain and the adequacy of its management in Jordan. Method: A convenience sample of 162 cancer patients from two hospitals participated in a cross-sectional survey using an Arabic version of the Brief Pain Inventory-short form (BPI). Results: 73.3% of the patients had pain severe enough to merit rating on the BPI. The mean of the worst pain scores in the past 24 hours was high at 7.5 out of 10 (standard deviation (SD) 2.7). 31% of patients with pain had not been treated for their pain, and the mean Pain Management Index score was -1.20 (SD 1.0). Conclusion: These cancer patients were experiencing high levels of pain, which was undertreated. Providing adequate pain management is a priority, hence more education, training, and resources are needed in Jordan to reduce cancer patients' suffering.
  International journal of palliative nursing 03/2013; 19(3):125-30.
• Article: ehospice: palliative care news, views, and inspiration from around the world.

  Kate Jackson, Daniel Ward
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  ABSTRACT: ehospice is a new website (www.ehospice.com) and app that utilises the latest technology to offer a portal for news, opinion, information, and inspiration for people involved in hospice and palliative care. It was launched in October 2012 and has already been accessed by over 60 000 people globally.
  International journal of palliative nursing 03/2013; 19(3):109-Unknown.
• Article: Facilitating advance care planning in community palliative care: conversation starters across the client journey.

  Jeanine Blackford, Annette F Street
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  ABSTRACT: This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.
  International journal of palliative nursing 03/2013; 19(3):132-9.
• Article: An evaluation of the activity of a 7-day, nurse-led specialist palliative care service in an acute district general hospital.

  Sally Hall, Andrew Davies
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  ABSTRACT: Introduction: This report describes the activity of a new 7-day-per-week, nurse-led palliative care service in an acute district general hospital in the UK. Methods: The service is based in a hospital with an integral cancer centre. On the weekends, one clinical nurse specialist (CNS) is present within the hospital, with a consultant providing telephone support. The data for this report was obtained by reviewing the team's clinical database and the patients' individual clinical assessments. Results: During the first year, the CNSs undertook 651 face-to-face weekend consultations. Overall, 25% of the total consultations and 18% of new patient consultations were undertaken on the weekends. The primary reasons for reviewing patients on the weekends were pain (46%), other symptoms (27.5%), and patient on the Liverpool Care Pathway (17%). Overall, 23% of new patients died over the weekend or in the early hours of the Monday morning. Conclusions: This service evaluation provides evidence of the value of having a 7-day-per-week palliative care service in an acute district general hospital.
  International journal of palliative nursing 03/2013; 19(3):148-50.
• Article: The role of a community palliative care specialist nurse team in caring for people with metastatic breast cancer.

  Maria Leadbeater
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  ABSTRACT: An audit was undertaken of people with a diagnosis of breast cancer who were referred to a community palliative care specialist nursing team over a 12-month period, to explore the reasons for referral to the service and the duration of involvement with the service. Breast cancer patients accounted for 10% of the total referrals to the specialist service, with symptom management (including pain control) and emotional support being the main reasons for referral. The majority of people referred with breast cancer had metastatic breast cancer (87%); interestingly, 13% had primary breast cancer. The mean duration of intervention was 3 months and 1 week. Referrals seemed to occur late in patients' disease trajectories, and total numbers were lower than might be expected. It may be concluded that there is scope for the specialist palliative care team to be a more integral part of care for patients with metastatic breast cancer.
  International journal of palliative nursing 02/2013; 19(2):93-7.
• Article: Narrative medicine as a means of indirectly seeking parental opinion in children's palliative care.

  Laura Campbell
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  ABSTRACT: In a developed-world context, it may seem obvious that children's palliative care providers seek the opinions of relatives prior to making team-based decisions around a child's care (Machare Delgado et al, 2009; Bélanger et al, 2011). Relatives, especially mothers, are considered to have a critical role in making decisions (Walther, 2005; Konrad, 2008).
  International journal of palliative nursing 02/2013; 19(2):56-7.
• Article: Attitudes regarding life-sustaining measures in people born in Japan, China, and Vietnam and living in Texas.

  Gloria Duke
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  ABSTRACT: Cultural beliefs about and preferences for care at the end of life are diverse and unique in many respects. This descriptive qualitative study presents findings about the attitudes and preferences of people born in Japan, China, and Vietnam and living in the southern part of the USA regarding life-sustaining measures. In-depth personal and focus group interviews were conducted with 46 participants and thematic analysis completed. The findings reflected some similarities and differences among the three groups concerning initiation and discontinuance of artificial nutrition and mechanical ventilation. They also demonstrated the requirement for sensitivity to individual needs when honouring the wishes of patients and surrogate decision makers. Interventional studies should follow that test educational strategies to improve practice outcomes for health-care providers who care for these populations at this vulnerable time of life.
  International journal of palliative nursing 02/2013; 19(2):76-83.
• Article: Politics and palliative care: Singapore.

  Dion Smyth
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  ABSTRACT: Dion Smyth's review of the internet for palliative nursing.
  International journal of palliative nursing 02/2013; 19(2):102-Unknown.
• Article: Can the Liverpool Care Pathway make a recovery?

  Carole Mula
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  ABSTRACT: During the latter part of 2012, the Liverpool Care Pathway (LCP) came under some serious criticism in the media. Apparent examples of shocking bad practice were emphasised, including dying patients being deprived of food and water and in some cases not receiving any treatment at all, and a lack of communication with patients and families whereby they were unaware that the pathway had been implemented and/or no opportunity was presented for a patient to be taken off the pathway even if there was a marked improvement in their condition.
  International journal of palliative nursing 02/2013; 19(2):55-Unknown.
• Article: Working in a medicalised world: the experiences of palliative care nurse specialists and midwives.

  Barbara van Brummen, Lauren Griffiths
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  ABSTRACT: Aim: This paper reports a study that explored birth and death care experiences from the perspectives of midwives and palliative care clinical nurse specialists (CNSs). Methods: A grounded theory approach illuminated the social processes associated with caring during birth and death. Data was collected during 2011 through in-depth semi-structured interviews with eight participants: four midwives and four CNSs from UK NHS Trusts. Findings: Four categories were identified through thematic analysis: memories, one act, advocate, and medical event. These integrated to create a core category: working to counter the pathologisation of birth and death. Conclusion: The participants illustrate the impact of medicalisation on the experience of birth and death and struggle with the negative effects of this. Health professionals should work toward practice that emphasises the importance of holistic care.
  International journal of palliative nursing 02/2013; 19(2):85-91.
• Article: Grading clinical guidelines for the use of transmucosal immediate-release fentanyl products in breakthrough pain.

  Scott Handsaker, Laura Dempsey, Carole Fabby
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  ABSTRACT: Pain is a complex symptom that is commonly feared in palliative care owing to its significant effects on patients' quality of life (QoL), and is directly associated with morbidity. More specifically, the management of breakthrough pain (BTP) is particularly important. Opioids play a major part in the management of BTP, and the various transmucosal immediate-release fentanyl (TIRF) products are a common treatment choice. This paper considers the strength of the evidence underlying recommendations regarding the use of TIRF. Failure to consider the quality of evidence in practice can lead to misguided recommendations. Guidelines should therefore be used to inform clinicians of the quality of the underlying evidence and whether recommendations are strong or weak. The GRADE (Grading of Recommendations Assessment, Development, and Evaluation) approach is increasingly being adopted worldwide as it provides a system for rating quality of evidence and strength of recommendations that is clear, comprehensive, transparent, and practical. This paper adopts the GRADE approach to assess the strength of recommendations made in a 2011 review by Zeppetella in order to develop guidelines for the use of TIRF. The recommendations include that TIRF products can be considered for first-line treatment and that they should be individualised to patients who are on a background opioid.
  International journal of palliative nursing 02/2013; 19(2):60-5.
• Article: Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan.

  Marcel Arcand, Kevin Brazil, Miharu Nakanishi, Taeko Nakashima, Michel Alix, Jean-François Desson, Rémy Morello, Louise Belzile, Marie Beaulieu, Cees Mpm Hertogh, Franco Toscani, Jenny T van der Steen
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  ABSTRACT: Background: The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses. Methods: The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version). Results: Overall, 188 nurses completed a survey questionnaire. The booklet was accepted best in Canada and less so in France and Japan. Despite regional variation, the majority of the nurses perceived the booklet as useful for families. The French and Japanese nurses also reported a greater need for palliative care education in advanced dementia. Conclusion: The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.
  International journal of palliative nursing 02/2013; 19(2):67-74.
• Article: Palliative care on Twitter: who to follow to get started.

  Craig Nicholson
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  ABSTRACT: Palliative care on Twitter: who to follow to get started.
  International journal of palliative nursing 01/2013; 19(1):6-7.
• Article: Politics and palliative care: Thailand.

  Dion Smyth
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  ABSTRACT: Dion Smyth's review of the internet for palliative nursing.
  International journal of palliative nursing 01/2013; 19(1):50-Unknown.
• Article: Nurses' perceptions of caring for dying patients in an open critical care unit: a descriptive exploratory study.

  Amanda McCallum, Ruth McConigley
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  ABSTRACT: Background: Nurses in critical care areas play a vital part in providing end-of-life care and recognise that an ideal death should be peaceful, dignified, and comfortable. However, environmental restrictions in critical care units can make a peaceful death unachievable and can have a profoundly negative impact on end-of-life care. Purpose: To describe the provision of end-of-life care in an open high-dependency unit. Method: A descriptive exploratory approach was used involving semi-structured interviews with a purposive sample of five registered nurses working in the high-dependency area at a major teaching hospital. The interviews were audiotaped and transcribed. Thematic analysis was used to code the data and identify themes. Results: Three themes emerged from the data. The core theme was 'the nurse as protector'. The two other themes were 'conflict of care' and 'peace and quiet'. Within these themes, characteristics of an ideal death were identified and barriers to providing an ideal death were acknowledged. Conclusion: This study illustrates nurses' perceptions of caring for dying patients in an open critical care unit. This environment influences the development of the nursing role as protector and presents barriers to achieving an ideal death.
  International journal of palliative nursing 01/2013; 19(1):25-30.