@WeEOLC tweetchat – talking about DNACPR: the family experience

The next @WeEOLC tweet chat, on the subject of Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) and the family experience, is being held on Tuesday 1 December 2015, 8pm to 9pm.

The tweetchat is being hosted by Sacha and Kate, two individuals who have a fair amount of experience of this topic.

Sacha Langton-Gilks (@SachaLG) is the mother of David or ‘DD’ who died age 16 from a rare brain tumour. David died at home, surrounded by his family in August 2012.

Kate Masters (@katemasters67) is the daughter of Janet Tracey who died on 7 March 2011 in hospital following a major traffic accident (19 February 2011) and a recent diagnosis of lung cancer (5 February 2011).

Why is this important?

Firstly, talking about Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) with adults is one of those very difficult conversations. Clinicians report anxiety before discussions [1] despite there being evidence that patients can find DNACPR discussions acceptable [2].

There is significant variability in DNACPR decision-making and implementation as well as poor discussions and misunderstandings [3]. A recent survey of 48 NHS Trusts showed significant variation in the translation of the national DNACPR guidelines into the Trusts DNACPR policies [4].

Fritz et al. point out the legal and ethical concern about the manner in which DNACPR decisions are approached, with decisions often not discussed or communicated effectively to patients or their relatives. [5]

There are similar issues reported in the children and young people literature. Hsiao at al. identified the importance of relationship building, demonstration of effort and competence, information exchange, availability, coordination of care and appropriate level of child and parent involvement in end of life discussions with children. [6]

de Vos et al. agree commenting that parents are able to handle a more active role than they are currently being given. [7]

Why Twitter?

Social media and twitter is a great community as it expands and challenges thinking and enables the sharing of ideas, experiences and resources across physical, organisational and intellectual boundaries [8,9].

Judging by the plethora of academic, clinical and social discussions and guidance it is not surprising if some people are uncertain of how to use it – as well as question its validity or usefulness. However, Twitter has the potential to reach out to different communities, facilitating debate and conversations.

Join us on the 1 December to be part of the conversation. You can read more here about the tweet chat on the We Communities website.

References

1. Low C, Finucane A, Mason B & Spiller J. Palliative care staff’s perceptions of do not attempt cardiopulmonary resuscitation discussions. International Journal of Palliative Nursing. 2014; 20(7):327–333. http://doi.org/10.12968/ijpn.2014.20.7.327
2. Hall C C, Mark K, Oxenham D & Spiller J A. “Do Not Attempt Cardiopulmonary Resuscitation” discussions at the point of discharge: a case note review of hospice practice following local integrated policy implementation. BMJ Supportive & Palliative Care. 2011; 1(2):123–126. http://doi.org/10.1136/bmjspcare-2011-000094
3. Mockford C, Fritz Z, George R, Court R, Grove A, Clarke B. … Perkins G D. (2015). Do not attempt cardiopulmonary resuscitation (DNACPR) orders: a systematic review of the barriers and facilitators of decision-making and implementation. Resuscitation. 2015; 88:99–113. http://doi.org/10.1016/j.resuscitation.2014.11.016
4. Freeman K, Field R A & Perkins G D. Variation in local trust Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) policies: a review of 48 English healthcare trusts. BMJ Open. 2015; 5(1):e006517. http://doi.org/10.1136/bmjopen-2014-006517
5. Fritz Z, Malyon A, Frankau J M, Parker R A, Cohn S, Laroche C M, … Fuld J P. The Universal Form of Treatment Options (UFTO) as an alternative to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders: a mixed methods evaluation of the effects on clinical practice and patient care. PloS One. 2013; 8(9):e70977. http://doi.org/10.1371/journal.pone.0070977
6. Hsiao J L, Evan E E & Zeltzer L K. Parent and child perspectives on physician communication in pediatric palliative care. Palliative & Supportive Care. 2007; 5(4):355–365.
7. de Vos M A, Bos A P, Plotz F B, van Heerde M, de Graaff B M, Tates K, … Willems D L. Talking with parents about end-of-life decisions for their children. Pediatrics. 2015; 135(2): e465–76. http://doi.org/10.1542/peds.2014-1903
8. Russell S, Middleton-Green L, Johnston B. Introducing End Of Life Care discussions via @WeEOLC 2015. http://wecommunities.org/blogs/127 (downloaded 6th Nov 2015)
9. Taubert M, Watts G, Boland J, Radbruch L. Palliative social media. BMJ Supportive & Palliative Care. 2014; 4(1):13-8.