The ethics of prioritizing access to palliative care: a qualitative study

American Journal of Hospice & Palliative Medicine, 2019 36(7) p.577-582

Philip, Jennifer; Russell, Bethany; Collins, Anna; Brand, Caroline; Le, Brian; Hudson, Peter; Sundararajan, Vijaya

Semi-structured focus groups and individual interviews were conducted with twenty health professionals working across various disciplines, service types and locations in Victoria, Australia.  This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. The authors argue that making explicit the processes and influences upon decision-making provides greater transparency that limited resources are allocated in an equitable and reproducible way.

The trajectory of functional decline over the last 4 months of life in a palliative care population: a prospective, consecutive cohort study

Palliative Medicine, 2019 33(6) p.693-703

Morgan, Deidre D; Tieman, Jennifer J; Allingham, Samuel F; Ekström, Magnus P; Connolly, Alanna; Currow, David C

Understanding current patterns of functional decline will inform patient care and has health service and resource implications.  Data were collected from 55,954 patients cared for in hospices, hospitals and at home. Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale.  Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

Fulltext available in Palliative Medicine 

Socioeconomic factors affecting access to preferred place of death: a qualitative evidence synthesis

Palliative Medicine, 2019 33(6) p.607-617

Turner, Victoria; Flemming, Kate

Existing quantitative evidence suggests that at a population level, socioeconomic factors affect access to preferred place of death. However, the influence of individual and contextual socioeconomic factors on preferred place of death in the UK are less well understood.  The authors conclude that the main factor affecting access to preferred place of death was social support; people with fewer informal carers were less likely to die in their preferred location. Other key findings included fluidity around the concept of home and variability in preferred place of death itself. They suggest there needs to be more widespread discussion and documentation of preferred place of death while also recognising these preferences may change as death nears or in times of crisis.

Teaching health-care providers to query patients with cancer about sexual and gender minority (sgm) status and sexual health

American Journal of Hospice & Palliative Medicine, 2019 36(6) p.533-537

Cathcart-Rake, Elizabeth J.; Breitkopf, Carmen Radecki; Kaur, Judith; et al

End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. It also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.

Volunteer involvement in advance care planning: a scoping review

Journal of Pain and Symptom Management, 2019 57(6) p.1166
Sellars, Marcus; Simpson, Jamie; Kelly, Helana; et al

Volunteer involvement in ACP has not been clearly described in the literature. This study aimed to map research on volunteer involvement in ACP, identify outcomes associated with ACP volunteer models, and determine gaps in existing knowledge. The results obtained will help to inform strategies that will maximize volunteer effectiveness and performance monitoring in ACP delivery.  A positive finding from the review was that most of the volunteer-led ACP facilitation programs reported improvements in the frequency of completion of ACP conversations or advance care directives, compared with having no ACP initiative in place. In addition, volunteers in both facilitation and education roles became more comfortable discussing ACP as they became more experienced in their role. 

Fulltext available in Journal of Pain and Symptom Management 

A palliative care model and conceptual approach suited to clinical malignant haematology

Palliative Medicine, 2019 33(5) p.483-485
Button, Elise; Bolton, Michael; Chan, Raymond J; et al

In this opinion piece the authors discuss a palliative care model and conceptual approach that are well suited to clinical malignant haematology and can lead to best practice palliative and end-of-life care for this unique population.  Palliative care is still integrated from diagnosis and tailored around the individual’s needs, but, in this model, can lead to death and bereavement care or cure and survivorship care. This model demonstrates the evolution of the palliative care model from terminal care to individualised care that is responsive to patients’ needs and unpredictable illness trajectories. 

Fulltext available in Palliative Medicine

Advance care planning in progressive neurological diseases: lessons from ALS

BMC Palliative Care 2019 18:50
Antje A. Seeber, A. Jeannette Pols, Albert Hijdra, Hepke F. Grupstra, Dick L. Willems and Marianne de Visser

The authors used the knowledge gained from observing ACP in a tertiary ALS centre in Amsterdam to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases.  They suggest that it is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, they argue that such a well-structured approach would enhance the quality of care and life of patients with other chronic progressive neurological diseases.

Fulltext available in BMC Palliative Care 

Imminent death: clinician certainty and accuracy of prognostic predictions

BMJ Supportive & Palliative Care, 2019, May 10

Nicola White, Fiona Reid, Victoria Vickerstaff, Priscilla Harries, Christopher Tomlinson, Patrick Stone

The results of this study show that even when doctors are very (>90%) confident that a patient will die within the next 72 hours, these estimates are only correct on 75% of occasions. It is therefore important for clinicians to convey this level of uncertainty in their communications with patients and relatives. This suggests that while clinical predictions will continue to have a role for routine prognostication, other approaches (such as the use of prognostic scores) may be required for those cases where doctors’ estimates are indeterminate.

Fulltext available in BMJ Supportive and Palliative Care 

Opioid use in palliative care: new developments and guidelines

Prescriber, 2019 30(4) p.25-31

Lucy Bemand-Qureshi; Faye Gishen; Adrian Tookman

This article looks at the analgesic options available and reviews recent evidence and guidelines.

Full text available in Prescriber

Breakthrough cancer pain in patients with abdominal visceral cancer pain

Journal of Pain and Symptom Management, 2019 57(5) p.966-970
Mercadante, Sebastiano; Adile, Claudio; Masedu, Francesco; Valenti, Marco; Aielli, Federica

The study aim was to assess the characteristics of breakthrough cancer pain (BTcP) in patients with abdominal cancer pain, and the eventual factors associated with its presentation.  Four hundred and fourteen patients were included.  The researchers found that in nearly a third of patients, the breakthrough pain was predictable and that ingestion of food was the most frequent trigger. 

Young people and their understanding of loss and bereavement

Bereavement Care, 2019 38(1)  p.6-12
Scott, Ros; Wallace, Rebecca; Audsley, Annie; Chary, Srini

The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them.  It was found that pupils who had experience of major loss or bereavement showed significant awareness of their feelings. It appears that young people primarily seek support from family, friends and the school.