Author: Brigitte Durieux
Posted: August 2019
Clinician: And you felt all alone?
Patient: [crying] It was so scary.
Clinician: And what was scary about it just being alone, the sense of being alone?
Patient: It seem like I try to get away and I got caught up in everything and I couldn’t move I just; I’m going around in circles. I don’t even wanta talk tell about it anymore [crying and starting to sound short of breath, breathing heavy].
Palliative Care to those researching it
Understandably, the end-of-life setting can be an emotional and heavy one. First and foremost, those affected are the people experiencing the end of their lives – but there also exists an emotional toll on clinicians and researchers within palliative care. Within the conceptually related spheres of hospice and palliative care clinicians, there is a high burnout rate stemming from emotional exhaustion1.
This conceptual basis can extend to the research environment, as described by Ellington et al., who state that alongside burnout, researchers in end-of-life communication may develop attachments to participants and suffer emotional and existential impact on personal life2 because of their participation. Due to the nature of the data, researchers of palliative care communication bear witness to the sensitive and emotional themes inherent to the context.
In the case that a researcher is new to palliative care, some of the interactions witnessed may elicit a shocked or emotional response. If one has not yet been familiar with it, dying has not seemed real or close to home, and witnessing it be discussed openly can be quite jarring (those who have worked in palliative care a long time can also be struck by feeling overwhelmed by death3). In addition, the role of the researcher in this field is to evaluate data, not engage in the human experience as a clinician does; they may observe intense emotion without any attachment to any qualitative human response. This has been my personal experience, and has led to lasting sentiments of guilt.
Emotions and Sentiments: “Gravity”
In previous work, we have defined instances of silences which occur across our dataset and may mark instances of important emotional communication/human connection. For several of our definitions, silences are made significant by their surrounding speech containing gravity.
Gravity: an expression of unpleasant emotion
(such as sadness or fear), or information shared
with an identifiable cue indicating that the speaker
perceives the message to be unfavorable
(such as prognosis or loss).
However, it is quite difficult to impart to a reader who has not witnessed gravity just how important these moments truly come across in a human sense. They are moments where, due to content, overarching themes, vocal tone/timbre/pace, etc., it is communicated to one listening that the situation is thematically, emotionally, and symbolically significant. These moments of gravity are often followed by a coder or researcher having to take pause after listening. As humans, the end of life is universal. In my own experience with these moments, in hearing talk of death, I am forced in some capacity to think about my own death, and can immediately understand the meaning of a patient talking of it when it may be near.
Examples of Gravity
Clinician: So what is your understanding of the options right now?
Patient: Well, I know my time is up. I know that I’m … my dear wife is waiting for me. I just … I just want to be there for her.
Family member: You’re ready. Right?
Clinician: What are you hoping for now? What are you hoping for with your life?
Patient: I just want to… want to be there for my dear wife.
Clinician: [Chuckles] So, p_name do you know what the options are for you right now for your care with the rest of your life, how you could spend the rest of your life?
Patient: All I know is that I want to get it over with.
Clinician: You want to get it over with?
Patient: Yes.
The text above is taken from a de-identified excerpt from one of the conversations in our dataset. Highlighted in bold are statements which contribute to the gravity perceived to coders within the conversation. On top of conversation theme and words spoken, there are affective cues which make the moment feel more emotional: the patient’s voice sounds strained and feeble, but also peaceful, happy, and faraway. It is a notable moment, to hear a person saying that they are ready to join their loved ones, and contentedly ready to be done with life. Listening to it feels incredibly intimate, and as a researcher, one feels like an intruder.
Clinician: Are you afraid of anything? Truthfully?
Patient: Well to be truthful a lot of people say well I’m not afraid to die. I’m afraid of dying. I don’t wanta die
Patient: The scariest thing is uh…
Clinician: Thank you for admitting that by the way
Patient: Sometimes when you hurt really bad and you take your medications, you be afraid to go to sleep. You be afraid to be alone.
Clinician: You’re afraid you won’t wake up.
Patient: Right and it’s a scary life really. When you get to this point, stage 4, it gets to be very scary. You don’t know what to expect next. Ya know?
Clinician: Do you believe in a better something?
Patient: A better life.
The above excerpt marks another situation in which gravity is tangibly present. The patient gives very raw expression of fear in illness and of realistically-near death. In the audio, the voice of the patient is unsteady and very emotional while speaking. There is sadness and hope in the end of the clip, and it becomes difficult as a researcher listening to exercise emotional detachment from the scenario.
Response of the VCL: the singing bowl
During the Connectional Silence project and following it, we discovered that there remained an emotional heaviness in coders after spending a block of time listening to the audio data. We as a lab discovered that in working with this data, we were quite affected by emotional weight. Coders like myself felt a sense of guilt in quantifying qualitative data (or in other words, in representing a human no longer alive with a simple numerical value, as is necessary in making binary choices). This led to lab discussion, as was offered by PI Robert Gramling at the start of the project, and has ultimately led to the lab adopting a new practice.
We use a Tibetan singing bowl as a meditation facilitator4 for our group. While associated with Buddhism, the singing bowl itself is not a religious icon or symbol, and this allows us to take part in a ceremony together without any interference of religion. In our experience as a lab, the harmonics produced by ringing the bowl brings one present to the moment, calling our collective consciousness to be fully human and present. We find the sound useful to honoring people as well as our emotions, recapturing our experience to the now. It creates and holds a shared energy of contemplative presence for all involved.
We applied for and received IRB approval to read the names of each of our participants, to thank and give respect to all who let us witness their vulnerable conversations for the sake of our research. At each of our lab meetings, we go around the table, each member reading a participant’s name and ringing the singing bowl.
Since we began, we have made it through our list of participants multiple times, and the pre-lab meeting ritual has evolved to become a very personal moment of presence, mourning, celebration of life, and respect.
Amid our work last summer, when I initially sat down to write about the impact this research had on my psyche, I found it incredibly difficult. Re-reading what I wrote, I find nothing usable, as I had been far too emotional to write anything concrete. A year has passed, and I am separated enough from the full-time exposure that I can write about the situation more clearly. I cannot overstate the effect that our lab’s singing bowl ritual has had on my own peace about death and dying. It has allowed me to feel comfortable in doing research, as I feel we actively give time to respect those who have shared their intimate human moments with us.
Sources
1: Kamal, A. H., Bull, J. H., Wolf, S. P., Swetz, K. M., Shanafelt, T. D., Ast, K., … Abernethy, A. P. (2016). Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S. Journal of pain and symptom management, 51(4), 690–696. doi:10.1016/j.jpainsymman.2015.10.020
2: Ellington L, Reblin M, Berry P, Giese-Davis J, Clayton MF. Reflective research: supporting researchers engaged in analyzing end-of-life communication. Patient Educ Couns. 2013 Apr;91(1):126-8. doi: 10.1016/j.pec.2012.09.007. Epub 2012 Oct 23. PubMed PMID: 23092615.
3: Breitbart W. (2017). On the inevitability of death. Palliative & supportive care, 15(3), 276–278. doi:10.1017/S1478951517000372
4: Goldsby, T. L., Goldsby, M. E., McWalters, M., & Mills, P. J. (2017). Effects of Singing Bowl Sound Meditation on Mood, Tension, and Well-being: An Observational Study. Journal of evidence-based complementary & alternative medicine, 22(3), 401–406. doi:10.1177/2156587216668109