We have collated information relating to palliative care that may be of use during the current time.
Palliative Care Research
These are papers from the Marie Care Palliative Care Research Department at UCL.
Communication with patients and their families
Over this period, practitioners will have many difficult conversations with patients and their families, including advance care planning, establishing ceilings of treatment and discussing patients’ preferred place of death. The articles in this section explore advance care planning, decision making, and conversations with families of patients and the end of life.
- Anderson R, Stone P, Low J, Bloch S. (2020) Managing uncertainty and references to time in prognostic conversations with family members at the end of life: A conversation analytic study. Palliative Medicine https://doi.org/10.1177/0269216320910934
- Anderson R, Bloch S, Armstrong M, Stone P, Low J. (2019) Communication between healthcare professionals and relatives of patients approaching the end-of-life: a systematic review of qualitative evidence. Palliative Medicine https://doi.org/10.1177/0269216319852007
- Harrison Dening K, Sampson EL, De Vries K. (2019) Advance care planning in dementia: recommendations for healthcare professionals. Palliative Care https://doi.org/10.1177/1178224219826579
- Harrison Dening K, King M, Jones L, Vickerstaff V, Sampson EL. (2016) Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia? PLOS ONE https://doi.org/10.1371/journal.pone.0159056
Online and community support for patients and carers
Our research finds innovative ways to support patients and carers at the end of life. As NHS resources become more stretched, people are looking for support online and from their community. Articles in this section explore the potential role for online and community support at the end of life.
- Davies N, Walker N, Hopwood J, Iliffe S, Rait G, Walters K. (2019) A “separation of worlds”: The support and social networks of family carers of people with dementia at the end of life, and the possible role of the internet. Health and Social Care in the Community https://doi.org/10.1111/hsc.12701
- Davies N, Hopwood J, Walker N, Ross J, Iliffe S, Walters K, Rait G. (2019) Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life. BMC Palliative Care https://doi.org/10.1186/s12904-019-0455-0
- Sawyer JM, Sallnow L, Kupeli N, Stone P, Sampson EL (2019) Social networks, social capital and end-of-life care for people with dementia: a realist review BMJ Open http://dx.doi.org/10.1136/bmjopen-2019-030703
Recognising dying
It is important that clincians recognise when their patients are dying so they can provide appropriate care, avoid unnecessary treatments, and allow families to prepare for the person’s death. Accurate recognition of dying is a difficult skill for healthcare professionals at all levels of experience.
- White N, Oostendorp L, Tomlinson C, Yardley S, Ricciardi F, Gökalp H, Minton O, Boland J, Clark B, Harries P, et al. ( 2019) Online training improves medical students’ ability to recognise when a person is dying: the ORaClES randomised controlled trial. Palliative Medicine https://doi.org/10.1177/0269216319880767
- White N, Oostendorp LJ, Minton O, Yardley S, Stone P (2019) Palliative care training in undergraduate medical, nursing and allied health: a survey. BMJ Supportive & Palliative Care. doi: 10.1136/bmjspcare-2019-002025
- White, N, Kupeli, N, Vickerstaff, V. Stone P. (2017) How accurate is the ‘Surprise Question’ at identifying patients at the end of life? A systematic review and meta-analysis. BMC Medicine. https://doi.org/10.1186/s12916-017-0907-4
- White N, Reid F, Harris A, Harries P, Stone P (2016) A Systematic Review of Predictions of Survival in Palliative Care: How Accurate Are Clinicians and Who Are the Experts? PLOS ONE https://doi.org/10.1371/journal.pone.0161407
Providing care for people who are homeless
The COVID-19 pandemic highlights the most vulnerable groups in our society who are at increased risk from COVID-19. There are numerous challenges to protecting and caring for people who are homeless. This section includes our work with the homeless people that is highly relevant to providing care to this group during this challenging time.
- Shulman C, Hudson BF, Kennedy P, Brophy N, Stone P. (2018) Evaluation of training on palliative care for staff working within a homeless hostel. Nurse Education Today. https://doi.org/10.1016/j.nedt.2018.09.022
- Hudson BF, Shulman C, Low J, Hewett N, Daley J, Davis S, Brophy N, Howard D, Vivat B, Kennedy P, Stone P. (2017) Challenges to discussing palliative care with people experiencing homelessness: a qualitative study. BMJ Open. http://dx.doi.org/10.1136/bmjopen-2017-017502
- Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, Davis S, Brophy N, Howard D, Vivat B, Stone P. (2018) End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. https://doi.org/10.1177/0269216317717101
- Hudson BF, Flemming K, Shulman C, Candy B. (2016) Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research. BMC Palliative Care. https://doi.org/10.1186/s12904-016-0168-6
Providing care to patients and families at the end of life
Unfortunately some people with COVID-19 may not survive, particularly if they have other health conditions (for example liver disease), are frail or have not responded to intensive care. Palliative care will enable them to remain comfortable and manage symptoms which may be distressing. The research papers in this section provide evidence on improving palliative care outcomes which may be relevant to patients with COVID-19, across settings.
- Finucane AM, Jones L, Leurent B, Sampson EL, Stone P, Tookman A, Candy B. (2020) Drug therapy for delirium in terminally ill adults. Cochrane Database of Systematic Reviews https://doi.org/10.1002/14651858.CD004770.pub3
- Vivat B, Bemand-Qureshi L, Harrington J, Davis S, Stone P. (2019) Palliative care specialists in hospice and hospital/community teams predominantly use low doses of sedative medication at the end of life for patient comfort rather than sedation: Findings from focus groups and patient records for I-CAN-CARE. Palliative Medicine https://doi.org/10.1177/0269216319826007
- Low J, Rohde G, Pittordou K, Candy B, Davis S, Marshall A, Stone P. (2018) Supportive and palliative care in people with cirrhosis:International systematic review of the perspective of patients, family members and health professionals. Journal of Heptology. https://doi.org/10.1016/j.jhep.2018.08.028
- Hudson BF, Best S, Stone P, Noble TB. (2019) Impact of informational and relational continuity for people with palliative care needs: a mixed methods rapid review. BMJ Open. http://dx.doi.org/10.1136/bmjopen-2018-027323
End-of-life care in care homes
Older adults residing in care homes are particularly vulnerable. At the end of life, caring for this population, many of whom will have dementia and multiple conditions, may be challenging. However, in the context of COVID-19 it is vital to ensure they can remain in their care home but receive optimal management of any symptoms they may experience.
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