Specialist palliative care staff’s experiences of talking with people with intellectual disability about their dying and death

WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC

Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in ‘Palliative Medicine’, or EAPC members can access a FREE copy from the EAPC website. 

Baby Foo, Michele Wiese, Bernadette Curryer, Roger J Stancliffe, Nathan J Wilson and Josephine M Clayton explain the background to their longer article selected as ‘Editor’s Choice’ in the April 2021 issue of ‘Palliative Medicine’.


Top row clockwise: Associate Prof. Nathan Wilson, Baby Foo, Prof. Josephine Clayton, Dr Michele Wiese, Emeritus Prof. Roger Stancliffe, Dr Bernadette Curryer.

 

Take a moment to consider these questions:

Have you cared for, and spoken with a person with intellectual disability about their dying and death? What are the facilitators and barriers to having these conversations?

We found that specialist palliative care staff, though having specialised skills, do not consistently talk with people with intellectual disability about their dying and death. These conversations were influenced by the following factors:

The relationship between these influences, at times conflicting, highlights the complex challenges in providing palliative care to this group. As one participant in our study shared:

I could sense that this person knew [intuitively about their dying] and was really distressed…I didn’t disclose to her the diagnosis…I felt some disquiet about it but I sort of bowed to the experience of the [disability staff to not disclose]…it was a dilemma.

Individualised communication strategies can help staff initiate and ‘pitch’ these conversations. Strategies include speaking slowly, using simple terms, repeating information, checking for understanding, and seeking the advice of the everyday caregivers about how best to communicate with the person. Online resources such as the Talking End of Life …with people with intellectual disability (TEL) offer helpful ‘how to’ tips.

Offering these conversations means that the dying person with intellectual disability has the opportunity to exercise informed choice and control about the extent to which they want to determine their end-of-life care, or not. While we acknowledge the particular challenges presented by this patient group, our findings recommend staff training in specialist communication skills. These skills will be applicable to not only those patients with intellectual disability, but also others who experience cognitive or communication difficulties.

Please comment and share your experiences

We hope that these findings are useful to you in your work, and invite you to think about your interactions with patients with intellectual disability. What have you found helpful? What do you think you need to enable you to have conversations about dying and death with this patient group? Please leave a comment and share your experiences.

References

  1. Forrester-Jones R. The road barely taken: funerals, and people with intellectual disabilities. J Appl Res Intellect Disabil 2013; 26(3): 243–256.
  2. Mason V and Dowling S. Bereavement in the lives of people with intellectual disabilities, http://www.intellectualdisability.info/life-stages/articles/bereavement-in-the-lives-of-people-with-intellectual-disabilities (2016, accessed 1 September 2018).

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews’ by Baby Foo, Michele Wiese, Bernadette Curryer, Roger J Stancliffe, Nathan J Wilson and Josephine M Clayton published in Palliative Medicine Volume 35 issue: 4, page(s): 738-749. Article first published online: March 17, 2021; Issue published: April 1, 2021. https://doi.org/10.1177/0269216321998207

  • Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter @palliativemedj

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles, as well as many other membership benefits. Just click here, https://www.eapcnet.eu/members/editors-choice/  enter your email address and membership password and choose from the list of journal articles.

How to join as an Individual/Associate Member, or to renew your membership

  • Individual members are invited to join the EAPC or renew their membership here.
  • Associate Members – all current members of our National Associations are invited to join the EAPC or renew their membership for FREE. Click here.

Links and resources


More about the authors…

Dr Michele Wiese: Adjunct Fellow, School of Psychology, Western Sydney University; Baby Foo: Clinical Psychology Registrar – Supportive & Palliative Medicine, Blacktown & Mount Druitt Hospitals; PhD Candidate, School of Psychology, The University of Sydney; Dr Bernadette Curryer: Centre for Disability Policy & Research, The University of Sydney; Emeritus Professor Roger Stancliffe: Centre for Disability Policy & Research, The University of Sydney; Associate Professor Nathan Wilson: School of Nursing and Midwifery, Western Sydney University; Professor Josephine Clayton: Centre for Learning & Research in Palliative Care, HammondCare, Greenwich Hospital; Northern Clinical School, The University of Sydney, Australia.

 

This entry was posted in EAPC-LINKED JOURNALS, Intellectual disabilities, Palliative Medicine: Editor's Choice, RESEARCH and tagged . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.