US study demonstrates that a nurse-led Transitional Palliative Care (TPC) programme is feasible, acceptable, and perceived as helpful | Journal of Palliative Medicine
Background: Many older adults live with serious illness for years before their death. Nurse-led primary palliative care could improve their quality of life and ability to stay in their community.
Objectives: To assess feasibility and acceptability of a nurse-led Transitional Palliative Care (TPC) program for older adults with serious illness.
Methods: The study was a pilot trial of the TPC program in which registered nurses assisted patients with symptom management, communication with care providers, and advance care planning. Forty-one older adults with chronic conditions were enrolled in TPC or standard care groups. Feasibility was assessed through enrollment and attrition rates and degree of intervention execution. Acceptability was assessed through surveys and exit interviews with participants and intervention nurses.
Results: Enrollment rate for those approached was 68%, and completion rate for those enrolled was 71%. The TPC group found the intervention acceptable and helpful and was more satisfied with care received than the control group. However, one-third of participants perceived that TPC was more than they needed, despite the number of symptoms they experienced and the burdensomeness of their symptoms. More than half of the participants had little to no difficulty participating in daily activities.
Conclusion: This study demonstrated that the nurse-led TPC program is feasible, acceptable, and perceived as helpful. However, further refinement is needed in selection criteria to identify the population who would most benefit from primary palliative care before future test of the efficacy of this intervention.
Full reference: Shigeko (Seiko) Izumi, et al. | Feasibility and Acceptability of Nurse-Led Primary Palliative Care for Older Adults with Chronic Conditions: A Pilot Study | Journal of Palliative Medicine | Volume 21 Issue 8 | August 2018
This study is the first to provide detailed data on patterns of referrals to UK hospices. The research highlights variations in referral patterns that depend on age, disease and where patients live | Palliative Medicine | via National Institute for Health Research
Referrals to hospice-based specialist palliative care occur closer to death in older than in younger people and in those without cancer. Existing evidence shows that some people near the end of life have a better quality of life and symptom control if they receive specialist palliative care. This research highlights the need to better understand the reasons for any delay.
In this large NIHR-funded hospice study people aged under 50 years were referred to hospice specialist palliative care about a month before people over 75 years. People with dementia or stroke were referred about nine days before death compared to much earlier for those with other diseases. The majority of people in hospice specialist care had cancer.
Expert commentary: Dr Fliss Murtagh, Professor of Palliative Care, Hull York Medical School:
“This national cohort study provides, for the first time, comprehensive and detailed information about patterns of hospice use in the UK. It shows that UK hospices predominantly care for those with advanced illness only in the last few weeks of their life. Those with advanced illness, therefore, miss out on the considerable benefits of early referral. Those who are older or with non-cancer conditions miss out on care the most.
Hospice care is known to improve wellbeing, increase family support, and reduce adverse outcomes from bereavement. Patients, public and especially professionals need to understand these benefits and refer much earlier for palliative and hospice care to be able to fully deliver these benefits”.
Full detail at National Institute for Health Research [updated NIHR signal – original article published 7th June]
Full reference: Allsop MJ, Ziegler LE, Mulvey MR, et al. | Duration and determinants of hospice-based specialist palliative care: a national retrospective cohort study | Palliative Medicine| 2018 Vol. 32 (8) | p1322–1333
Hall CC, Lugton J, Spiller JA, et al | CPR decision-making conversations in the UK: an integrative review | BMJ Supportive & Palliative Care | Published Online 14 August 2018
Objectives: Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) discussions with patients and their caregivers have been subjected to intense ethical and legal debate in recent years. Legal cases and national guidelines have tried to clarify the best approach to DNACPR discussions; however, there is little evidence of how best to approach them from the patient, family or caregiver perspective. This paper describes published accounts of patient, family and caregiver experiences of discussions about advance cardiopulmonary resuscitation (CPR) decision making.
Methods: An integrative review of the UK literature between 2000 and 2016 including qualitative and quantitative studies was conducted. Worldwide, 773 abstracts were identified, and 20 papers from the UK were included in the final analysis.
Results: Patient, family and caregivers prefer discussions to be initiated by someone trusted, and wishes for family involvement vary depending on the context. Timing of discussions should be individualised, though discussions earlier in the illness are often preferable. Discussions held in the acute setting are suboptimal. CPR decisions should be part of a wider discussion about future care and adequate communication skills training is important.
Conclusions: The findings of this review are at odds with the current statutory framework and potentially challenging for medical professionals who are working in a stretched health service, with pressure to discuss DNACPR decisions at the earliest opportunity. With increasing focus on person-centred care and realistic medicine, patient narratives must be considered by doctors and policy makers alike, to minimise harm.
This review shows that GPs have an important role in Advance Care Planning and that their involvement facilitates dying in the place of preference. | BMJ Supportive & Palliative Care
Background: With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important.
Objective: To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs’ and GPNs’ contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference.
Method: Systematic literature review. Data sources: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
Results: From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified.
Conclusions: Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required.
Full reference: Johnson CE, McVey P, Rhee JJ, et al. | General practice palliative care: patient and carer expectations, advance care plans and place of death—a systematic review | BMJ Supportive & Palliative Care | Published Online First: 25 July 2018
University of Liverpool |June 2018 | Hospice network must change ‘death house’ perception, academics tells MPs
Marketing experts from the University of Liverpool’s Management School have studied hospices and palliative care for the last four years. Academics Dr Philippa Hunter-Jones and Dr Lynn Sudbury-Riley argue that their research shows hospices must market themselves and their services more effectively in order to improve the experience of end of life care for both patients and families.
They cite how their data shows the general public have a lack of knowledge about the services available to the general public and how to access these services. The pair’s findings also highlight misconceptions about the term palliative, and a lack of emphasis on the importance of care at this life stage for the families of patients and the patients themselves (Source: University of Liverpool)
The academics were recently invited to Westminster to share their research with the All-party Parliamentary Group (APPG) Hospice and Palliative Care Inquiry into Improving Access to Hospice and Palliative Care.
The full news story is available from the University of Liverpool
Patients with incurable illnesses, among them dementia, liver failure are not receiving hospice care soon enough finds a Leeds University study. The NIHR funded study, which is also the first of its kind to look at this issue is (via Leeds University)
The researchers examined data from about one third of the UK’s hospices, including patient records of more than 42,000 people who died in 2015 with a progressive, advanced disease, after receiving community or inpatient palliative care at a hospice included in the study.
Among their key findings are that patients with cancer were admitted for hospice care 53 days before dying, for patients without cancer this was later with a referral 27 days before death. The team also identified variation across the coutnry with patients in the North admitted later than those in the South, Midlands and East of England.
Lead author of the study Dr Matthew Allsop said, “There are misconceptions held by the public and healthcare professionals about what palliative care is, who it is for, and when people can benefit from access to it.
“Palliative care is for any person diagnosed with a terminal illness, not just those with cancer. It aims to help patients and their families achieve the best quality of life through treating or managing physical symptoms, and helping with any psychological, social or spiritual needs (Source: Univeristy of Leeds).
The research has now been published in Palliative Medicine, the article can be read in full via Sage
Related: NIHR NIHR research highlights disparities in end-of-life hospice care