At the hospice that I visit there are usually two patients to a room. On this visit, while I was spending time with one patient, the patient on the other side of the curtain was getting his adult diaper changed. The patient had a bowel movement and the smell was powerful; really bad….I am shaking my head as I remember the stench..
Now I am going to share something about myself: I abhor the way the bathroom smells after I use it. I have been married to Mr. Darius for almost 20 years and I will still tell him “DON’T GO INTO THE BATHROOM, I JUST USED IT – IT STINKS!” That being said, you can imagine how I would feel having Mr. Darius wipe my butt after I had a bowel movement – I would be mortified; I would JUST DIE OF EMBARRASSMENT. Ok, maybe I would not “die of embarrassment” but I can see myself closing my eyes, pretending that I am not incapacitated and having my husband cleaning me up.
But back to this hospice patient. I was sure that man probably feels a loss of dignity at having 2 nurses clean his backside after he had a bowel movement. But then I got to thinking: what about all the losses that led up to this…
Abbas and Panjawi (2008) and Cassel (1982) developed this “Spiral of Spiritual Pain” (Figure 1). This spiral illustrates this “bit-by-bit” of loss of dignity that contributes to what some call “spiritual pain”. (When I speak of “spiritual”, I am not talking about spirit as it relates to “religion”, I am talking about the inner feeling one has within him/her self. (Although eventually further down the spiral, one may begin to call on his/her “God” for answers.))
This spiral of spiritual pain begins with:
(1) Getting a physical ailment; and the loss of being able to participate in some of the activities that were previously enjoyed.
(2) Due to the ailment, one starts losing social contacts and cannot go to work and engage in society; therefore there is a loss of social standing;
(3) Because he/she can no longer work there is a possible risk of loss of financial status;
(4) The person’s inability to work and inability to perform certain tasks that he/she was able to do before the physical ailment, puts a strain on the family, forcing them to cope with the illness as well as requiring another member of the family to take on the responsibility of providing and caring for the family. This could be the loss of being the provider;
(5) One may experience fluctuating moods; in turn his/her family may be under immense stress to remain balanced and calm; therefore there is “the loss of how things used to be“ ;
(6) Psychologically one is effected by his/her illness, feeling lonely, lost and useless; this could be the loss of who they used to be;
(7) The distress turns spiritual, as one is may begin to question God or some other Supreme Being as to why this is happening to him/her;
(8) Existentially, one may question their existence, if they deserve to be here. People suffer from what they have lost of themselves in relation to the world of objects, events, and relationships (Cassell, 1982).
As a single woman I was fiercely independent; a lot less so since I’ve been married to Mr. Darius, but still quite independent. As I was reading about this spiral, I realize that dying breaks you down, piece by piece. So, perhaps that patient wasn’t suffering a loss of dignity at all; that was taken, piece by piece, some time ago. I don’t know. What y’all think?
Abbas, S. O., & Panjwani, S. (2008). The Necessity of Spiritual Care Towards the End of Life (Vol. 24, pp. 113-118):
Cassel, E. J. (1982). The Nature of Suffering and the Goals of Medicine. New England Journal of Medicine, 306(11), 639-