End of Life Communication Group Henderson A, Ryan R, Henderson S, - - PDF document

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End of Life

Amanda Henderson Associate Professor University of the Sunshine Coast, Australia

Declaration of conflict of interest

Review author with the Cochrane Consumer and Communication Group

Henderson A, Ryan R, Henderson S, Young J, Bradford NK, Bothroyd JI, Herbert A. Interventions for interpersonal communication about end of life care between health practitioners and affected people. Cochrane Database of Systematic Reviews 2018, Issue 9. Art. No.: CD013116. DOI: 10.1002/14651858.CD013116.

The conversation

“Death, dying and bereavement are all an integral part of life; however, reflecting on, and discussing death, can be profoundly confronting and difficult. Open and frank discussion of death and dying including end of life care options, approach to futile treatment, caring and bereavement should be encouraged within the profession and in the wider community”

(AMA, 2014, p.1)

End of Life (EoL)

“The period when a patient is living with, and impaired by, a fatal condition, even if the trajectory is ambiguous or unknown. This period may be years in the case of patients with chronic or malignant disease, or very brief in the case of patients who suffer acute and unexpected illnesses or events, such as sepsis, stroke or trauma”

(ACSQHC, 2015, p.33)

Context

“The WHO identified that, globally, palliative care needs are very high, with an estimated 20 million people needing end-of-life care each year”

(AIHW , 2014, p.2)

Death is common to all, however, the process and experience of dying and the health care systems and environments in which this happens, are not the same for everyone

Communication

“a purposeful, planned and formalised strategy associated with a diverse range of intentions or aims, including to inform, educate, communicate with, support, skill ... engage and seek participation of people.”

(Hill, 2011, p.30)

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EoL Communication

Communication could be related to physical, psychological, spiritual or the cultural needs of patients, families and carers; relief of symptoms or suffering; pain management; care directives; dying; and death… An exploratory study conducted with pediatric practitioners confirmed that evidence-based interdisciplinary interventions are needed to support EoL discussions (Henderson et al., 2017) General guidelines exist, but they do not necessarily use rigorous evidence related to the effectiveness of specific EoL communication interventions

A consumer perspective Only by being involved from the “other side”, as the patient or their family/carer, can the impact of the EoL conversation, or its omission, be fully appreciated A consumer (patient/family/carer) perspective provides a very different lens for reflecting on this EoL conversation

Communication

What interventions exist for the EoL conversation? What levels of evidence exist to confirm the interventions used for EoL conversations? What research still needs to be undertaken to support this critically important area? Are EoL research/ interventions co- created with consumers?

Our Cochrane review

Amanda Henderson Rebecca Ryan Simon Henderson Jeanine Young Natalie Bradford Josephine Bothroyd Anthony Herbert

• Interventions for interpersonal communication

about end of life care between health practitioners and affected people.

• Cochrane Database of Systematic Reviews

2018, Issue 9. Art. No.: CD013116. DOI: 10.1002/14651858.CD013116.

• Intervention review: benefits and harms of

interventions used in healthcare and health policy

• Nominated as one of five priority reviews for

the Consumer and Communication Group

EoL review objective

“To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL.”

(Henderson et el., 2018, p.4)

Why is it important to the review?

• help practitioners address gaps in care
• improve outcomes such as distress and

poor quality of life associated with poor communication

• lay groundwork that will allow patients and
• thers affected by EoL events to participate

in decisions about treatment and care

Improved and more effective communication between health practitioners and people affected by EoL has the potential to:

(Henderson et al., 2018. p.4)

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EoL communication intervention

EoL intervention where a patient is likely to die within 12 months and must include a health practitioner Verbal: in-person, telephone, videoconferencing, remote video links, Internet-enabled verbal discussions Specifically related to one or more EoL elements: physical, psychological, spiritual, cultural, relief of symptoms or suffering, pain management, care directives, dying and death

Method: Types of studies Randomised and cluster randomised controlled trials (RCTs) that evaluate the effects of interventions for communicating with patients and families or carers about EoL care

• Quasi-RCTs (defined as a trial attempting, but

not achieving, random allocation of participants)

Method: Types of participants

Patients with a life limiting illness expected to die within 12 months, any age from birth Family or carers of a patient with a life- limiting illness Health care professionals could include: doctors, nurses, midwives, allied health practitioners, social workers, government health care workers, health care team, interdisciplinary team, or a group of health care providers, lay health workers,

• ther community providers or volunteers

Method: Outcome measures Patient, family and/or carer

• utcomes

Knowledge and understanding about what might happen (prognosis), or what to do, or options Evaluation of the communication - positive constructs (e.g. satisfaction, calmness or confidence about ability to manage the future) Evaluation of the communication - negative constructs (e.g. fear, anxiety, distress) Discussions of EoL care/EoL (e.g. frequency, length, type, participants) Any adverse outcomes or harms

Search methods

Electronic searches

• The Cochrane

Central Register of Controlled Trials (CENTRAL)

• The Cochrane

Library

• MEDLINE
• EMBASE
• PsycINFO
• CINAHL

Searching other resources

• Experts in the

field, research reference lists

• f relevant

studies, grey literature, World PalliativeCare Alliance

Data collection

Selection of studies RCT Classifier Covidence: import citations, screening titles, abstracts, full text To date

• Screened 5752 citations
• Approx. 100 studies for full

review (still have some conflicts to be considered)

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Consumer involvement

Consumer groups, industry and/or government agencies The protocol received feedback from a consumer as part of standard CCCG editorial processes Cochrane consumer network

A complex review

It’s impossible to know everything—pooled knowledge Outcome of our review: No idea! (Yet) Without the data there is only

• pinion…

2016 Impact Factor for Cochrane Database of Systematic Reviews is 6.124 The Cochrane Consumer and Communication editorial team…

Potentially a Cochrane living review

A systematic review which is continually updated, incorporating relevant new evidence as it becomes available Underpinned by continual, active monitoring of the evidence (i.e. monthly searches) Immediately include any new important evidence (meaning data, studies or information) that is identified

Finally…

EoL care discussions are of interest to everyone. No matter who you are, where you live, or how it happens, there are two experiences that every living person has in common—they were born, and one day they will die. This is a universal and indiscriminate truth for all people.

References

Australian Institute of Health and Welfare. 2014. Palliative care services in Australia. http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129548892 Australian Medical Association. 2014. AMA position statement on end of life care and advance care planning. https://ama.com.au/sites/default/files/documents/AMA_position_statement_on_end_of_life_care_and _advance_care_planning_2014.doc_1.pdf Australian Commission on Safety and Quality in Health Care. 2015. National consensus statement: essential elements for safe and high quality end-of-life-care. Commonwealth of Australia . https://www.safetyandquality.gov.au/publications/national-consensus-statement-essential-elements- for-safe-high-quality-end-of-life-care/ Henderson, A., Ryan, R., Henderson, S., Young, J., Bradford, N.K., Bothroyd ,J.I., Herbert ,A. Interventions for interpersonal communication about end of life care between health practitioners and affected

• people. Cochrane Database of Systematic Reviews 2018, Issue 9. Art. No.: CD013116. DOI:

10.1002/14651858.CD013116. Henderson, A., Young, J., Herbert, A., Bradford, N., Pedersen, L. 2017. Preparing paediatric healthcare professionals for end-of-life care discussions: An exploratory study. Journal of Palliative Medicine, 20(6), 662-666. doi: 10.1089/jpm.2016.0367 Hill S. (ed). 2011. The Knowledgeable Patient: Communication and Participation in Health. Chichester, UK: Wiley Blackwell. [Other: http://au.wiley.com/WileyCDA/WileyTitle/productCd-1444337173.html]