Dying values? Does pain matter?

Many established values of palliative care practice (like symptom relief, truth-telling, alleviation of suffering) are based on research done outside of Africa, yet African patients may have different values when it comes to death and dying.  A group of South African researchers sought to find out what processes Xhosa people (a 7.9 million-strong South African population) value in a “good death”.  They chose Xhosa traditional healers as their source of information, and interviewed 21 of them, not distinguishing between herbalists and diviners.  The participants had different degrees of training and experience, and different practice locations.  Some of them were known to incorporate Westernised health care approaches in their practice.

This study honed in on the things that were seen as important for a “good death”, including pre-death processes, and what was important after death.  The findings themselves make for an interesting (cross-cultural) read (Graham et al. 2013).  What I find intriguing is that physical suffering hardly gets a mention.  Participants emphasised that suffering can prevent a “good death”, but this suffering was described in psychosocial and spiritual terms.  They highlighted the importance of directly meeting the patient’s expressed needs and preferences, gathering the family to allow for comfort, resolution of conflict, and the passing on of a verbal will, and that spoken words were highly valued in the period preceding death.  But the relief of physical suffering seems to have been passed by! There is one reference to it in the manuscript: a throwaway “physical symptoms were mentioned”.

Perhaps I think this way because I’m in “the pain world” (and let’s bear in mind that I am a physiotherapist, not a palliative care practitioner), but are we not accustomed to placing substantially more priority on physical symptoms in our patients?  So what accounts for this obvious discrepancy between what Xhosa traditional healers and what more Westernised healthcare practitioners might anticipate as being important to their respective patient groups?

There are many possible answers to this question.  But the one that most relates to my own clinical practice is the idea that the traditional healers may have a distorted impression of the things that are important to their patients.  As I read this article, a voice in my head reminds me that, when I am a patient speaking to a healthcare practitioner, I select what I say according to what I think they want to know.  I won’t tell my doctor that I’m upset about my cat not eating, or that I’m hoping my brother will come home to visit me, because I don’t think my doctor can influence those situations.

As a physiotherapist, when I interview a patient, I ask them questions to elicit information on things that I think could be relevant, and things that I think I have the tools to change.  Perhaps we are both (patient and clinician) complicit in limiting a conversation to the things that we tacitly agree are relevant to this particular interaction.  The important question for the clinicians is: could we, in our interactions with patients, be subtly limiting the things we allow them to talk about?

And, in the context of this study, is it possible that Xhosa patients interact with their traditional healers in a similar way, highlighting psychosocial and spiritual matters because those are considered the domain of a traditional healer?  And, on the other side of the coin, do they discuss their more physical concerns with their western-trained healthcare practitioners, because those are considered the domain of a western healthcare practitioner?  If that is so, it is no wonder that the findings of interviews with traditional healers would be biased towards information about non-physical concerns.

Of course, it is quite possible that Xhosa people may genuinely care vastly more about their psychosocial and spiritual wellbeing than about the “physical” aspects of a dying experience.  And there are other studies that hint that it might be so (for example, Selman et al. (2011).  But, as healthcare practitioners, let’s not assume that the questions we ask and the implicit messages we convey about our “scope of practice” have no effect on what our patients choose to tell us.

Tory Madden

Tory MaddenTory arrived from South Africa to start her PhD at BiM.  She is a physiotherapist who worked clinically before turning her focus toward research.  She is interested in pretty much anything related to pain and neuroscience, thanks to some particularly inspirational teaching by Romy Parker during her undergraduate training at the University of Cape Town.

Tory is rapidly developing a fondness for Australia’s amazing TimTams, but is rather worried about whether she will survive the Adelaide winter. She loves sports but has been forced to take some time out due to a knee injury. She has used this extra time to try her hand at table tennis, with which she is making moderate progress, and rowing, at which she should not yet be left unsupervised…

References

Graham N, Gwyther L, Tiso T, & Harding R (2013). Traditional healers’ views of the required processes for a “good death” among Xhosa patients pre- and post-death. Journal of pain and symptom management, 46 (3), 386-94 PMID: 23149082.

Selman LE, Higginson IJ, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Moll T, Sebuyira LM, Ikin B, & Harding R (2011). Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study. Health and quality of life outcomes, 9 (1), 21-34 PMID: 21477274