Unequal access to hospice care across England

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.

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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

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Cancer diagnoses and incidence rates in England in 2016

The Office for National Statistics and Public Health England  have released statistics for Cancer diagnoses in England for 2016.

The main points are:

  • The number of new cases of cancer in England continues to rise and, in 2016, there were 303,135 cancers registered (excluding non-melanoma skin cancers); this is an increase of 3,212 from 2015 and is equivalent to 828 new cases being diagnosed each day during 2016.
  • More cancers were registered in males (155,019) than females (148,116) and across the majority of cancer sites, more males were diagnosed with cancer than females; this is a persistent feature of the data, as reported in previous cancer registration years.
  • The age-standardised incidence rates for newly diagnosed cancers were 663.4 per 100,000 males and 541.1 per 100,000 females; age-standardised rates for newly registered cases of cancer (incidence) were higher in males than females, which is a repeating trend of the data, as outlined in previous cancer registration statistics.
  • Breast (15.2%), prostate (13.4%), lung (12.7%) and colorectal (11.5%) cancers continue to account for over half of the cancer registrations in England for all ages combined.

The bulletin can be downloaded here 

The dataset for 2016 (and previous years)  can be found here 

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.

 

Health Care Use by Older Adults With Acute Myeloid Leukemia at the End of Life

Little is known about the patterns and predictors of the use of end-of-life health care among patients with acute myeloid leukemia (AML) | Journal of Clinical Oncology

End-of-life care is particularly relevant for older adults with AML because of their poor prognosis.

We performed a population-based, retrospective cohort study of patients with AML who were ≥ 66 years of age at diagnosis and diagnosed during the period from 1999 to 2011 and died before December 31, 2012. Medicare claims were used to assess patterns of hospice care and use of aggressive treatment. Predictors of these end points were evaluated using multivariable logistic regression analyses.

In the overall cohort (N = 13,156), hospice care after AML diagnosis increased from 31.3% in 1999 to 56.4% in 2012, but the increase was primarily driven by late hospice enrollment that occurred in the last 7 days of life. Among the 5,847 patients who enrolled in hospice, 47.4% and 28.8% started their first hospice enrollment in the last 7 and 3 days of life, respectively. Among patients who transferred in and out of hospice care, 62% received transfusions outside hospice. Additionally, the use of chemotherapy within the last 14 days of life increased from 7.7% in 1999 to 18.8% in 2012. Patients who were male and nonwhite were less likely to enroll in hospice and more likely to receive chemotherapy or be admitted to intensive care units at the end of life. Conversely, older patients were less likely to receive chemotherapy or have intensive care unit admission at the end of life, and were more likely to enroll in hospice.

End-of-life care for older patients with AML is suboptimal. Additional research is warranted to identify reasons for their low use of hospice services and strategies to enhance end-of-life care for these patients.

Full reference: Wang, R. et al. (2017) Health Care Use by Older Adults With Acute Myeloid Leukemia at the End of Life. Journal of Clinical Oncology. Published online: 7th August 2017

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

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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

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

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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.

Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life

Developing accurate prognostic awareness, a cornerstone of preference‐based end‐of‐life (EOL) care decision‐making, is a dynamic process involving more prognostic‐awareness states than knowing or not knowing | The Oncologist

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Understanding the transition probabilities and time spent in each prognostic‐awareness state can help clinicians identify trigger points for facilitating transitions toward accurate prognostic awareness. We examined transition probabilities in distinct prognostic‐awareness states between consecutive time points in 247 cancer patients’ last 6 months and estimated the time spent in each state.

Terminally ill cancer patients’ prognostic awareness generally remained unchanged, with a tendency to become more aware of their prognosis. Health care professionals should facilitate patients’ transitions toward accurate prognostic awareness in a timely manner to promote preference‐based EOL decisions.

Terminally ill Taiwanese cancer patients’ prognostic awareness generally remained stable, with a tendency toward developing higher states of awareness. Health care professionals should appropriately assess patients’ readiness for prognostic information and respect patients’ reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness, provide desired and understandable prognostic information for those who are ready to know, and give direct and honest prognostic information to clarify any misunderstandings for those with inaccurate awareness, thus ensuring that they develop accurate and realistic prognostic knowledge in time to make end‐of‐life care decisions.

Full reference: Hsiu Chen, C. et al. (2017) Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by Multi‐State Markov Modeling. The Oncologist. Published online before print: 6th July 2017.