Marian Krawczyk

Marian Krawczyk

I am a Lord Kelvin Adam Smith Fellow with the End of Life Studies Group at the University of Glasgow. I am a medical anthropologist who is interested in interdisciplinary research on the end of life.

Activity

  • @FionaMcDougal - I think 'mystery' is a powerful and apt description here.

  • We're now at the end of Week 1. I hope that you've enjoyed it - I certainly have found your comments thoughtful and engaged. I look forward to hearing about your experiences of Weeks 2 and 3.

  • Fabulous to see you here.

  • @AndreaM hospice services vary both between and within different countries, including funding models (state funded, chairity funded, private-health insurance funded). Some global North countries have very few or no hospices, such as Norway where most people die in long-term care settings (many which have palliative care services).

  • From the comments below, it's clear that people are surpised the answer. What do you think might be some of the reasons?

  • A thoughtful experiential response @AndreaM which also highligths the generational differences on this issue.

  • An excellent question to ask @LindaHallows . Why do you think the 'experts' acted in this way?

  • When looking at other peoples' very interesting responses below, see if you can identify any themes!

  • @JanelleAmador you've identified a key issue - the financial costs of dying.

  • There have been positive changes in the global North @LorraineHoward but in the global South access to opioids is still deeply problematic.

  • @CynthiaAnnJohnson You've identified a key challenge - when people don't necessarily follow trajectories, how can you manage the large amounts of system resources needed to efficiently and compassionatley organize end of life care.

  • @HiroshiM are you making the assertion that living in a 'death-denying' society may actually increase anxiety and depression because it forces us only to value living and be positive no matter the cost?

  • An excellent question to ask. You'll find further discussion in Week 3 about old age rational suicide (where older people feel they have lived a “completed life” and feel ready to die).

  • You are right about different 'processes' that lead to death. You'll see we talk about dying trajectories - different patterns of dying - in following steps.

  • Not suprisingly @caroljarvis many people who have an uneasy relationship with mortality are drawn to this field. It's a great reflexive pratice to inform yourself and treat fears with curiosity.

  • A thoughtful response @AmandaWorthington-Wallin

  • As you note, the process of becoming an ancestor requires certain forms of both social and personal remembering. Fascinating to think about the relationship between dying, death and 'memorialization'.

  • Hi Katherine - We have some faculty here in our school working on dark tourism you might find interesting:
    https://www.gla.ac.uk/schools/interdisciplinary/staff/guillaumetiberghien/#researchinterests

  • @ValerieTaiwo . It is an interesting claim that we start dying as soon as we are born. While it may have some philiospohical salience, it's clearly not a valid arugment biologially or socially. In large part the answer to this question depends on how you define dying. In your opinion, when do you think the dying process starts?

  • @AndreaM . You raise an interesting tension - you first mention the need to value individuals and then say 'especially the elderly' which is a population-level group. Can you say more about the relationship between the two in relation to dying and death?

  • This is an excellent discussion thread, started by an important question by @LindaKaze . Can we really know much about the lived experience of dying and death until we ourselves experience it?

  • As you evidence here, we all base our understanding on personal experiences.

  • The temporal issues are incredibly interesting to think about, aren't they? If you had to offer your opinion, when does 'dying' start?

  • Excellent self-reflexivity @AnnaErskine.

  • A thoughtful response - can you say more about about relationship between metaphysics and religion in regards to dying and death?

  • @EveWharton - is death always negative? Are there any situations or context where death may not be negative?

  • An interesting question. What are your thoughts?

  • Multidisciplinary perspectives are particularly useful in thinking about dying and death as there are both embodied indiviudal process as well as social ones.

  • Your share highlights how contemporary care pathways, by default, encourage acute hospital care the end of life. We'll be looking at that topic specifically later in the week. In the meantime, may your remaining time with your father continue to be as well supported as it sounds.

  • You might find the 19th century anthropologist Van Ganeep and 20th century sociologist Talcott Parsons of interest as they did quite a bit of work about dying, death, and bereavement as social and individual rites of passage.

  • @LindaKaze we'll be talking about end-of-life doulas in Week 2.

  • @LindaHallows please take all the time you need to move through this material as you may find that, given your circumstances, you need to exercise extra care.

  • Hello, and welcome to Week 1. Please take a moment to introduce yourself. I will be accompanying you this week as you move through key definitions and concepts in end of life care, with a particular focus on the hospital setting. I'm looking forward to reading your comments and experiences; your contributions are a highlight for the course convenors and for...

  • We now find ourselves at the end of Week 1. I've very much enjoyed reading all of your insights, experiences, and comments, particularly those of you who engaged with other learners. I've also enjoyed hearing that you've found the material stimulating and that you've learned new and useful ideas. I now turn you over to Dr Richards who will be engaging with you...

  • The concept of 'total pain' is one we are very interested in here at the End of Life Studies Group and we are actively conducting research on this topic from a social science perspective.

  • You've noted some subtle aspects of hospitals here, particularly that they are places of, and for, significant emotions.

  • You're absolutely right about the multiple complexities which influence services!

  • @JulieParle - 'major economic hubs' is an excellent turn of phrase. In many countries this is true both as employers and in some cases as very profitable businesses. Also find the phrase 'institutional memory' intriguging - tell me a bit more what you mean by this.

  • A really interesting distinction between brain death and circulatory death - thanks for this learning!

  • There is a great deal of cross-over been qualitative and quanitative research about the end-of-life; glad to see that you are already familiar with some key works!

  • Really interesting @JoannaHeneker and I'd love to stay in touch. Our school has an enviornmental studies department who are doing a lot of work on sustainability (including plastics, etc.). We also have quite a bit of interest in Health and Social Sector Leadership.

  • @JonjoHeneghan thanks for providing some further detail of your work!

  • Hi @DaisyCox - Yes. Many Nordic countries have developed alternatives to end-of-life care in hospital. For example, in Finland, health centres play a key role in end-of-life care, while in Norway nursing homes serve this role.

  • Hi @TaniaCox - My goal was to highlight that whether or not we openly acknowledge it, one of the main forms of care hospitals provide is end-of-life care, and therefore this form of care is a central part of the day-to-day functions of the hospital. For example, our colleague David Clark has done multiple studies of Scottish hospitals, finding that 30-45%...

  • You are not alone @CarolynYates - this assumption is one of the main reasons that I choose this country in particular. Good for you for publically recognizing your cultural assumptions!

  • @JoannaHeneker - It's a good question to ask. In relation to the above chart, hospices and hospitals are counted seperately. More generally, end-of-life care models differ in different countries and in different institutional locations. Some hospitals have specialist end-of-life care services in the Global North. Sometimes countries have a singificant number...

  • @FayeDavenport - you raise an important point, which is the connection between 'seeing' and communication. For many families it is seeing the physical changes (in combination with conversation with healthcare staff) that enables them to understand and acknowledge that death is nearing.

  • Your connection between birth and death is one that you'll see gets picked up again in Week 2 content.

  • Hi @AlisonStrickland - You provide an insightful reflection as to how a good death is as much about the social network as it is about the dying individual.

  • Hi @ArianePlaisance - While MAID and agressive life-extending care do both use medical technologies (similar processes), they differ in desired (if not actual) outcomes - one is to shorten life, the other is to extend (even for a bit). You are right in that both are based in the desire to control life and death.

  • That is the action of a good scholar!

  • Debbie, you might like to read a paper I co-authored quite a while ago: Communicating prognostic uncertainty in potential end-of-life contexts: Perspectives of Family Members
    https://link.springer.com/article/10.1186/s12904-016-0133-4

  • This is an excellent example @HenryCampbell - so many deaths in the global North contain both 'good' and 'bad' components at the same time. I am fond of the term 'ambivalent' to describe this both/and nature as it describes the capacity to hold two different experiences, viewpoints, or beliefs simultaneously.

  • That is unfortunate @HenryCampbell, and perhaps all too common. Planning and awareness don't always translate to ability to control the very end of life.

  • There are some very thougthful and insightful replies here. It's fascinating to see both overlap and diversity of opinions, alongside acknowledgement that the topic is complex and situation-dependent. Your responses reflect the nuanced nature of the end of life, dying, and death.

  • It is indeed complex @SamM, but you are grappling well with them!

  • I can tell you are a nurse @DebbieSpencer by your reference about good mouth care - so important, and so often overlooked, at the end of life.

  • Music can be an incredibly important part of peoples' end-of-life wishes. Have you heard of 'Threshold Choirs' who sing at peoples' bedsides at the end of life?

  • I agree @EmMahler that social death can accelerate clinical/biological death. At other time social death is a marker for impending clinical/biological death.

  • @JoannaHeneker - You're right to note the impact of lanugage. The phrase 'a good death' is an important, if usually poorly defined, descriptor for a cluster of processes, actions, and behaviours (norms) that we in the global North generally value and desire at the end of life. Others use equally 'slippery' terms such as 'dying well'.

  • @ChangFUnChi - I always tell my students that qualitative analysis in many ways emerged from studies about hospital dying. If you are interested in learning more about Glaser & Strauss' work, I highly recommend their Awareness of Dying (1965) and Time for Dying (1968). A bit 'dry' in parts as they are very detailed sociologists but invaluable work that still...

  • Such an interesting conversation thread here, made all the more so as it's based on such a rich diversity of personal and professional experiences.

  • Reading through the comments is one of the best parts of the course!

  • A thoughtful reply @DaisyCox. In some cultures prognostic 'awareness' is negotiated differently, such as key family members knowing but not telling the person with the illness (and this being the preference of all parties, including the terminally ill person).

  • I'm intrigued @ArianePlaisance - can you tell us more about your ethnographic research?

  • The end of life holds many interesting dualities, doesn't it @DeeFraser .

  • Hello @JoannaHeneker - An interesting thought about 'longer-term enviornmental impact of pallaitive care'. Can you tell us more about what you mean?

  • @BernadetteHall, you've raised an interesting point about 'readiness' at the end of life.

  • A really thoughtful reply @JulieParle .

  • You've hit on an interesting difference @ChangFUnChi - the difference between 'growing' and 'dying'.

  • I agree with @ChristopherL - a great thought-provoking post. I'm curious for your perspective @FloraLeslie; when do you think dying begins?

  • An excellent insight regarding location of dying @FayeDavenport, and you'll see that your experience with your mother is reflected in some of the upcoming steps.

  • You're right @HenryCampbell - it is an exceptionally rich research area, and you nicely highlight some of the key aspects which make it so.

  • You are getting to the 'heart' of the challenges in defining dying, including two of the most important: sudden death v gradual dying, and awarness of dying v lack of awareness (for various reasons). And what a great question to ask: "Are we dying if we don't know or accept that it is coming"? What are your throught on this?

  • 'Torn' is a very evocative phrase.

  • Hello @DebbieSpencer - You are providing great insight about the different aspects that together make up the dying process (and foreshadowing the content of some of the next steps!).

  • A very thoughtful answer @ChangFUnChi, and an excellent example of the difficulties that sometimes happen in the dying process.

  • Hi @FayeDavenport - you've asked a couple of excellent questions. What do you think? Do you think COVID-19 has led us to view dying and death differently, including more conversations about this topic?

  • Hello and welcome to the course. I hope you find it engaging and useful. I'm very curious about what an End of Life Care Facilitator does. Can you tell us a bit more about your work?

  • @KirraMoser - building and maintaining long-term supports are much different than time-limited volunteer efforts. It remains to be seen how this will continue to evolve as we move through the 2nd year of the pandemic.

  • You raise an important point Jessica, that different locations and geographies have very different experiences.

  • @AvrilSmart A sharp observation - the 'death positivity' 'death awareness' movement as a whole has been largely driven by middle class global North women. There are both benefits and unintended consequences to this.