Dignity for patients with psychiatric disorders
Would you be able share resources about groups who are using the PDQ or PDI in patients with serious persistent mental illness? I'm also curious if this concept has been utilized in patients at the end of their lives while being institutionalized or incarcerated.
Here are a few references to get you started on exploring these issues.
Testoni I, Marrella F, Biancalani G, Cottone P, Alemanno F, Mamo D, Grassi L. The Value of Dignity in Prison: A Qualitative Study with Life Convicts. Behav Sci (Basel). 2020 May 28;10(6):95. doi: 10.3390/bs10060095. PMID: 32481496; PMCID: PMC7349769.
Grassi L, Nanni MG, Caruso R, Ounalli H, Chochinov HM, Biancosino B, Testoni I, Murri MB, Bertelli T, Palagini L, De Padova S, Tiberto E. A comparison of Dignity Therapy narratives among people with severe mental illness and people with cancer. Psychooncology. 2022 Apr;31(4):676-679. doi: 10.1002/pon.5913. Epub 2022 Mar 7. PMID: 35226396.
Di Lorenzo R, Cabri G, Carretti E, Galli G, Giambalvo N, Rioli G, Saraceni S, Spiga G, Del Giovane C, Ferri P. A preliminary study of Patient Dignity Inventory validation among patients hospitalized in an acute psychiatric ward. Neuropsychiatr Dis Treat. 2017 Jan 23;13:177-190. doi: 10.2147/NDT.S122423. PMID: 28182110; PMCID: PMC5279815.
Attached is the cover of a Dignity Therapy document that a prison drew; sent to me by the prison chaplain.
See you tommorow.
My earlier comment was deleted when my phone died. Thankfully, I had taken a screen shot about half way through writing (see attached).
The highlight of my comment, which I was unable to retrieve in full, was that a friend of mine who is living with dementia and I worked through the PDQ both together and alone. Mertel chose to respond to the questions in writing prior to our phonecall and once we did "convene" I asked the questions and she read her responses to me (knowing the interview was being recorded and potentially shared with other students in the Dignity In Care Training course).
The process was not easy. She and I adjusted it, though, to allow her additional time to reflect, answer, review, and then share her answers with me for recording and documenting. She shared with me that "it was difficult at the beginning because at 73-years old I have not found much joy in my younger life" [sharing that she had lived through tremendous childhood trauma and abuse].
I'll be the first to admit I could have entered into this experience with Mertel with (atleast) more personal preparation, thoughtfulness, and time. She and I are still in the process of completing Dignity Therapy as she wants additional time to complete the questions and read them back to me so I may bequest a document to her husband and adult children.
I can share that this seems promising despite her advancing illness. To date, Mertel has written a very moving...I am tempted to call it "piece" because her answers are so poetic and eloquent...for her four daughters which, amongst much else, will read:
"I want them to remember 'lullaby and goodnight' sung to them every night. I want them to remember this was done with great love and pride."
Perhaps DT is suited well for persons living with [early stage] dementia. Perhaps the traditional process can be "tweeked" for use with these folks. More consultation with the "Dementia Community" is needed because as Mertel always says "nothing about us without us" and I'd like to pursue future opportunities to help those living with dementia participate in DT and to create their own document as powerful and unforgettable as Mertel's will be.
Thank you for sharing this Marissa, and thank you for being a champion of this work in patients with cognitive impairment.