Variations in the delivery of palliative care services to adults

HSIB – 13th July 2023

Palliative and end of life care is ‘variable and inequitable’ across the NHS in England, says our latest report.

The report sets out an investigation we undertook examining the quality and consistency of palliative care provided to adults. Since 2004, and even with a national strategy in place since 2008, numerous publications have highlighted concerns about the limitations of the delivery of palliative and end of life care. These limitations may be more noticeable in areas where funding for services is limited or where care is being delivered across wide geographical areas.

Our investigation offers a system-based lens on the delivery of palliative and end of life care, and why that delivery does not always meet people’s needs or what they should expect to receive.

Read the Report – Variations in the delivery of palliative care services to adults

Algorithms as good as doctors at predicting death in advanced cancer

NIHR | April  2021 | Algorithms as good as doctors at predicting death in advanced cancer

This Alert from the NIHR looks at two pieces of research funded by NIHR, and led by Marie Curie Palliative Care Research Department at University College London (UCL), whihc compared five digital prognosis tools clinician judgement in over 1 800 adults with incurable cancer in England and Wales. The experts conducted interviews with 29 patients who had recently been referred to community, hopsital and hospice palliative care services, 20 caregivers and 32 clinicians.

Both papers, now published in PLoS One report that algorithms can be as accurate as clinicians’ judgements for predicting how long terminally ill people with advanced cancer have left to live.  at least two of the studied algorithms were equally as good as the combined judgement of an experienced doctor and nurse in predicting whether patients would live for days, weeks or months.

The lead researcher- Professor Paddy Stone, from the Marie Curie Palliative Care Research Department at UCL- explained that although the best algorithms were as accurate as expert clinician judgement, the overall accuracy was only just over 60 per cent. The research concludes that while prognosis algorithms are currently no more accurate than clinicians’ judgments they may be helpful in other ways such as providing a supplementary second opinion or helping less experienced staff navigate difficult conversations with patients and their loved ones about their prognosis and end of life plans.

Professor Stone explained how important and valuable an accurate prognosis is for a terminally ill patient’s care: “ Knowing whether one only has days, weeks or a few short months remaining can help prepare for the end of life and to focus on achieving the best possible quality of life.  (Source: NIHR).

NIHR Algorithms as good as doctors at predicting death in advanced cancer

Primary papers

Prognostic tools or clinical predictions: Which are better in palliative care?

The Prognosis in Palliative care Study II (PiPS2): A prospective observational validation study of a prognostic tool with an embedded qualitative evaluation

Music in palliative care

Pommeret, S. et al. | Music in palliative care: a qualitative study with patients suffering from cancer | BMC Palliative Care | Volume 18, Article number 78 (2019)

Abstract

Background

The palliative care unit is an emotionally challenging place where patients and their families may feel at loss. Art can allow the expression of complex feelings. We aimed to examine how cancer patients hospitalized in the palliative care unit experienced a musical intervention.

Methods

We conducted a qualitative study based on semi-structured interviews. The study took place in a palliative care unit from 18 January 2017 to 17 May 2017. Two artists performed in the palliative care unit once a week from 9:30 am to 5:30 pm. The data from patient interviews were analysed based on an inductive approach to the verbatim accounts.

Results

The accounts we gathered led us to weigh the positive emotions engendered by this musical intervention against the potential difficulties encountered. The artists opened a parenthesis in the care process and brought joy and well-being to the palliative care unit. Patients also encountered difficulties during the intervention: reference to an altered general state, to loss of autonomy; a sense of the effort required, of fatigue; an adaptation period; reference to the end of life, to death; a difficulty in choosing songs.

Conclusions

Although music appeared to benefit the patients, it sometimes reminded them of their altered state. The difficulties experienced by patients during the experience were also related to physical exhaustion. Additional studies are needed to determine the benefits of music for patients and their families in the palliative care unit.

Full document at BMC Palliative Care

Best supportive care in advanced lung cancer—more than a label?

Bowden, J. et al | 2018 | Best supportive care in advanced lung cancer—more than a label?| BMJ|  363 |k5017.

In new analysis published in the BMJ, researchers including experts in palliative medicine discuss how they developed an innovative model of best supportive care to ensure that all people with advanced lung cancer in Fife, Scotland, were offered a minimum standard of care. 

Athens users can read the article at the BMJ  or Rotherham NHS staff can request it from the Library

 

Developing a model for embedded palliative care in a cancer clinic

Describe the development and key features of a model for embedded palliative care (PC) for patients with advanced kidney cancer or melanoma seen in a cancer clinic | BMJ Supportive & Palliative Care

Methods: Retrospective chart review of patients following an initial phase and then a prospective review following the implementation of a model for embedded PC.

Results: In the initial phase, 18 patients were seen for a total of 53 visits; 78% were seen more than once, with a mean of three visits per patient. In the model phase, 46 patients were seen for a total of 163 visits; 74% were seen more than once, with a mean of 3.5 visits. Demographics were similar between the two groups. Content of the first PC visit in the initial and model phases was symptom management (61% and 57%), psychosocial support/relationship building (28% and 35%) and advance care planning/decision-making support (11% and 8%), respectively.

Conclusions: The initial phase demonstrated acceptability and feasibility of a model for embedded PC for patients and the oncology team. Establishment of specific eligibility criteria and screening to identify eligible patients in the model phase led to an increased uptake of PC for patients with advanced kidney cancer and melanoma in a cancer clinic.

Full reference: DeSanto-Madeya, S. et al. Developing a model for embedded palliative care in a cancer clinic. BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) pp.247-250.

 

Transferring Palliative Care Inpatients to Residential Care

The survival of patients with advanced cancer, coupled with the increased presence of end-stage chronic illnesses in an aging population, is leading to a demand in palliative care | Journal of Social Work in End-of-Life & Palliative Care

Due to the ongoing need for acute-pain and symptom control in hospice/palliative care units, few are able to offer long-stay admission for those whose symptoms have stabilized. When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility may then be necessary. A core component of the role of palliative-care social workers involves working with patients and their families/carers when the care pathway shifts and the option of residential aged care facility (RACF) needs to be considered.

This research explored several issues, including the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient. An investigation was undertaken to identify concerns and barriers regarding the transition from hospice care to RACF and opportunities were highlighted to improve clinical practice in this area. A tripartite approach was adopted conducting face-to-face interviews with patients, their families/carers, and health care professionals. Members of the interdisciplinary team were interviewed and social workers working in similar inpatient palliative-care facilities undertook telephone interviews to gauge their experiences. A thematic analysis discerned a number of themes highlighting the impact of this transition on key stakeholders and incorporated recommendations to improve or best manage this process.

The research has highlighted the difficulties that patients/families encounter in this transition, as well as the emphases of protecting the integrity of the patient and family. This is achieved by holding open and ongoing dialogue, particularly through family meetings and working in collaboration with the patient, the family, and the team. Understanding the experience and impact of this transition on key stakeholders is helpful in building up a knowledge base and to ensure a more effective relationship occurs. This research incorporated the voices of terminally ill patients, families, and members of the health care team in order to understand their views and recommendations for best managing the transition from a hospice/inpatient palliative-care facility to a RACF. This enables their input to have some real impetus in clinical practice and service delivery.

Full reference:  Kallianis, V. et al. (2017) “Unexpected and Distressing”: Understanding and Improving the Experience of Transferring Palliative Care Inpatients to Residential Care. Journal of Social Work in End-of-Life & Palliative Care. Published online: 1 June 2017

The prevalence of comorbid cancer and dementia

Findings suggest that dementia is associated with poorer cancer outcomes

Objectives: A comorbid diagnosis of cancer and dementia (cancer–dementia) may have unique implications for patient cancer-related experience. The objectives were to estimate prevalence of cancer–dementia and related experiences of people with dementia, their carers and cancer clinicians including cancer screening, diagnosis, treatment and palliative care.

Method: Databases were searched  using key terms such as dementia, cancer and experience. Inclusion criteria were as follows: (a) English language, (b) published any time until early 2016, (c) diagnosis of cancer–dementia and (d) original articles that assessed prevalence and/or cancer-related experiences including screening, cancer treatment and survival. Due to variations in study design and outcomes, study data were synthesised narratively.

Results: Forty-seven studies were included in the review with a mix of quantitative (n = 44) and qualitative (n = 3) methodologies. Thirty-four studies reported varied cancer–dementia prevalence rates (range 0.2%–45.6%); the others reported reduced likelihood of receiving: cancer screening, cancer staging information, cancer treatment with curative intent and pain management, compared to those with cancer only. The findings indicate poorer cancer-related clinical outcomes including late diagnosis and higher mortality rates in those with cancer–dementia despite greater health service use.

Conclusions: There is a dearth of good-quality evidence investigating the cancer–dementia prevalence and its implications for successful cancer treatment. Findings suggest that dementia is associated with poorer cancer outcomes although the reasons for this are not yet clear. Further research is needed to better understand the impact of cancer–dementia and enable patients, carers and clinicians to make informed cancer-related decisions.

Full reference: L. McWilliams, C et al. | A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care | Aging & Mental Health |  Published online: 18 Jul 2017

Nurse-led intervention helps carers’ manage medication and cancer pain

The potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer are explored in this article | ScienceDaily

Image source: frankieleon – Flickr // CC BY 2.0

A study funded by Marie Curie and Dimbleby Cancer Care published today shows the potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer. Researchers from the University of Southampton, Cardiff University and University of Leeds have developed a nurse-led intervention to help carers with medication management, and evaluated its use in routine practice.

The Cancer Carers’ Medicines Management (CCMM) intervention addresses carers’ beliefs, knowledge and skills and promotes self-evaluation of competence. It centres on a structured conversational process between a nurse and carer. It is the first time that a study has attempted to integrate an intervention developed using input from carers and nurses into routine palliative care. The research showed that the CCMM intervention compared favourably with current practice as it offered a more systematic and comprehensive approach to supporting carer management of pain medicines.

• Overview
• Original research article

How are non-numerical prognostic statements interpreted and are they subject to positive bias?

Frank, clear communication with family members of terminally ill or incapacitated patients has important implications for well-being, satisfaction with care and sound decision-making | BMJ Supportive & Palliative Care

Objectives: Numerical prognostic statements, particularly more negative ones, have been found to be interpreted in a positively biased manner. Less precise non-numerical statements, preferred by physicians, and particularly statements using threatening terms (dying vs surviving) may be even more subject to such biases.

Methods: Participants (N=200) read non-numerical prognostic statements framed in terms of dying or surviving and indicated their interpretation of likelihood of survival.

Results: Even the most extreme statements were not interpreted to indicate 100% likelihood of surviving or dying, (eg, they will definitely survive, 92.77%). The poorness of prognoses was associated with more optimistically biased interpretations but this was not, however, affected by the wording of the prognoses in terms of dying versus surviving.

Conclusions: The findings illuminate the ways in which commonly used non-numeric language may be understood in numeric terms during prognostic discussions and provide further evidence of recipients’ propensity for positive bias.

Full reference: Moyer, A. et al. (2017) How are non-numerical prognostic statements interpreted and are they subject to positive bias? BMJ Supportive & Palliative Care Published Online First: 20 April 2017

Quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients

Anneke Ullrich et. al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients BMC Palliative Care. Published online 10 May 2017.

Background

This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.

Methods

During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions.

Results

FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3).

Conclusions

This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high.

Full document available here