# Total Pain in Palliative Cancer Patients: A Qualitative Analysis

Katell Menard, Maya Corman, Michaël Dambrun

► To cite this version:

Katell Menard, Maya Corman, Michaël Dambrun. Total Pain in Palliative Cancer Patients: A Qualitative Analysis. EAPC Congress, Jun 2023, ROTTERDAM, Netherlands. Palliative Medicine, 37 (1S), pp.100-101, 2023, 10.1177/02692163231172891. hal-04980701

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Submitted on 6 Mar 2025

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Distributed under a Creative Commons Attribution 4.0 International License
# Total Pain in Palliative Cancer Patients : A Qualitative Analysis

Ménard K. ¹, Corman M. ², Dambrun M. ²

1. Cancer Center Centre Jean Perrin, Clermont Ferrand, France

2. Université Clermont Auvergne, Laboratoire de Psychologie Sociale et Cognitive (LAPSCO UMRS CNRS), France

I N T R O D U C T I O N

## What's the Total Pain lived experience of patients in cancer palliative care ?
And how they cope with ?

### Proposal to update the concept of **Total Pain** by Cicely Saunders (1967):

* Palliative care development (1,2)

* Patients' needs, believes and perceptions about their psychological and physical health (for example about complementary medicines)

<figure><img src="image_2.png" /></figure>

**Total Pain** is physical, social, psychological and spiritual pain. Each aspect of pain being interdependent of others (3)

M E T H O D

### Design of an interview guide based on ground expertise and literature

14 semi-structured interviews
2 research centers

interpretative phenomenological analysis

### Patients' characteristics :

9 Women

M age = 68
(SD= 7.19)

- Gynecologic Cancer (N=3)

Karnofsky
Score = 50%

Disease stage
III or IV

- Bronchic Adenocarcinom (N=2)

- Urologic Cancer (N=4)

- Gastro intestinal Cancer

## Sample interview questions for each dimension of pain

* Could you describe how is your physical pain? What impact this pain has in your inner life? (Physical sphere)

* How isolated have you felt in the last few days? Can you describe this experience and tell me what would you like to do or have done to alleviate this feeling of isolation? (Social sphere)

* Can you describe your emotional state over the last few days? What negative/positive emotions are you feeling the most these days? What are you doing to alleviate them? (Psychological sphere)

* Can you tell me what means spirituality ? how is spirituality important in your daily life? How helps you the most to face the difficult days? days?

R E S U L T S

## What are the characteristics of Total Pain ?

**The pain** rejected, avoided (64%)
"I would tell "no, I'm not in pain" but I'm sure I was in pain"

The unpredictability of pain and the anxious anticipation of pain (71%)

"sometimes there's a sudden acceleration that you don't control"
"I have no pain, but I'm waiting for it, I wonder how it will appear"

Loss of social role and the social function of body (50%)

"they don't give a damn about me. They're happy, I'm waiting"

Not to give a bad image of oneself (64%)

"meeting people requires me to forget myself as I am now in order to remain more or less in what they know of myself before"

Loss of Contact with nature (50%)

« not going to the sea side is a lack. »

« Strengthening connection with nature : I don't have that desire anymore, it's over, there are things I can't do anymore. »

**The evocation of the end of their life** although there is no question about this theme (57%)

The value of **transmission** (43%)

"this notion of family, of continuity, of things that pass from one to the other, serenely, it was important. And I am in the middle, with something violent and that, for me, is terrible."

The **Search of meaning** (57%)

"How do these birds fly in group? How do these trees grow?"

**Negative emotions** related to the uncertainty of future (50%), the loss of autonomy and dependence: annoyance, fear, hopelessness

Regrets to have failed (50%)

"I'm ashamed that I couldn't get over that pain"

"I regret not really expressing myself as I should have"

## What are their resources ?

**Spontaneously Mind body practices**

(71%): breathing, walking, massage, meditation, visualization

**Capacity to feel positive and negative emotions** (43%)

« it makes me sad and happy at the same time » « fear it can actually be in relation with the disease ... you have to trust, you have to trust

**Nature a way to connect with something bigger** (57%)

« I feel like that's where we come from. It's what gives us life ... not more for me, well ... it's life. It's' infinite actually »

« We are part of nature » « We are living only by others. We all need love, sweetness.»

**An individual definition of spirituality, distinguished from religion** (57%)

« It's really something that everyone experiences. It's individual. » « Living decently would be living spirituality and trying to understand life»

"Spirituality is tasting the esthetic of things" "It's walking in the beauty"

**Living in connection with caregivers, but also with a community** (57%)

"I think, I'm in a lineage, I'm not a number put down like that in the universe"

"Idea of some universal spirit, something greater than ourselves that has no relation with individuality

**Nature to savore, feel positive emotions** (57%)

« A flower that grows. » « sometimes I stay like this and listen to the birds. It's beautiful, I love it. »

**Nature to live in connection with the past (souvenirs)** (64%), or in connection with autonomy, action (57%)

"I saw a shooting star last night, unbelievable ! It made me feel good, I have memories about a shooting star" "Landscapes that you don't forget. Once you get the image in your head that's it"

"you become part of the nature"

"I'm a girl of the soil"

C O N C L U S I O N

## Emergence of Environmental Pain : suffering from the lack of contact with nature, nature that inspires or links to something bigger

## A personal definition of spirituality that refers with values, transmission, connection with others and with the universe

## Mind-Body spontaneous link and self resourcing practices

### Références :

1-Krawczyk, M., Wood, J., & Clark, D. (2018). Total pain: Origins, current practice, and future directions. *Omsorg: The Norwegian Journal of Palliative Care*, 2018(2).

2-Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., ... & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. *New England Journal of Medicine*, 363(8), 733-742.

3- Mehta, A., & Chan, L. S. (2008). Understanding of the concept of "total pain": a prerequisite for pain control. *Journal of Hospice & Palliative Nursing*, 10(1), 26-32.

4-Rego, F., Rego, G., & Nunes, R. (2018). The psychological and spiritual dimensions of palliative care: a descriptive systematic review. *Neuropsychiatry*, 8(2), 484-494.

5- Zimmermann, F. F., Burrell, B., & Jordan, J. (2020). Patients' experiences of a mindfulness intervention for adults with advanced cancer: a qualitative analysis. *Supportive Care in Cancer*, 28(10), 4911-4921.