Marian Krawczyk
I am the Lead for the End of Life Studies MSc/PGDip/PGCert Program at the University of Glasgow. I am a medical anthropologist who is interested in interdisciplinary research on the end of life.
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Marian Krawczyk replied to Alexandra P
In the fabulous example you present @AlexandraP physical death preceeds social death, as it does in many other cultures.
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Marian Krawczyk replied to Clare Lawrance
An excellent and detail response @ClareLawrance. If you had to answer your own question, what is your opinion?
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Marian Krawczyk replied to Roland Darroll
I have honestly never come across the word 'dier' before!
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Marian Krawczyk replied to Laurèl H
To play devil's advocate @LaurèlH - can someone have a good death with good care and autonomy without ever having to accept that they are dying?
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Marian Krawczyk replied to Susan Patterson
@LaurèlH - that's really powerful. Such insights never leave.
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Marian Krawczyk replied to Paula Sholade
This is unfortuantely a very apt description of what happens in many care homes in the global North. Given the number of people who die in care homes, it is important that all forms of death be something people are able to meaningfully engage with, which is not the current situation. However since this is true in most care settings, it doesn't seem set to...
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Marian Krawczyk replied to Lee A
Interesting. Arguably this could be framed as a form of voluntary or imposed withdrawl - an aspect of social death perhaps in our contemporary world.
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Marian Krawczyk replied to Clare Lawrance
Really interesting @ClareLawrance to hear about your experiences using trajectories.
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Marian Krawczyk replied to Clare Lawrance
I'm glad you had a chance to read the Lancet Report and really interesting to hear about your experiences regarding cultural variability in determining death.
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Marian Krawczyk replied to Matthew Goodwin Bruce
@MatthewGoodwinBruce - You are highlighting important cultural responses to ageing and dying. One argument that can be made for global North cultures is that these processes are increasingly seen as pathological, without meaning or value, and therefore need to be truncated as much as possible.
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Marian Krawczyk replied to Heather Wills
That is an enormous amount of caregiving @HeatherWills.
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Marian Krawczyk replied to Bushra Ghafoor
I don't think your last comment is off-topic at all @BushraGhafoor - it highlights how the end of life fundamentally affects the totality of a person's social network.
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Marian Krawczyk replied to Paula Sholade
A significant insight @PaulaSholade - that the end of life can create significant socioeconomic changes to a person's world; it is not just a physical process internal to the individual.
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Marian Krawczyk replied to Farida Majiyagbe
@FaridaMajiyagbe - I feel your frustation, even though you have provided a solid definition. One of the most engaging aspects of this topic is how it continues to evade certain forms of 'knowing'.
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Marian Krawczyk replied to Tori O
@ToriO - Your multiple definitions of dying very nicely highlights the mutibility of the concept.
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Marian Krawczyk replied to Matthew Goodwin Bruce
To play devil's advocate @MatthewGoodwinBruce - if, for example, a person's brain isn't fully developed until they are in their 20s, could you still argue that deat hstarts from the day of birth?
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Marian Krawczyk replied to Lee A
That's an interesting definition @LeeA - it sounds like you have a health and social care background?
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Marian Krawczyk replied to Steffi Wilson
@SteffiWilson - This is a very thoughtful response. You eloquently highlight the key points that are coming up!
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Marian Krawczyk replied to Reynaldo Caceres
What move or character would you choose @ReynaldoCaceres ?
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@AnnaHayes - Here in the UK we definitely see much more media coverage regarding health care since the start of the pandemic.
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Yes, @BerniceChukwumba - the sociobiological impacts has not just been due to getting COVID-19!
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@MatthewGoodwinBruce - Do you think the pandemic has raised awareness about death? Could it also be argued that it has resulted in even more focus on technological/biomedical interventions?
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Marian Krawczyk replied to Charlotte D
Well @CharlotteD - you might be our youngest participant to date! I'm curious to hear about your interested in palliative care, and your thoughts as you move through the course materials.
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Hello Eddie, and welcome. Please share your work experiences with us as you move through the course, and I'm so pleased that you're wanting to deepen your own understanding of dying, death, and bereavement.
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Hello Matthew - You do valuable and hard work, and I imagine many of the people you work with are nearing the end of life. Glad to see you here.
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Hello and welcome @SteffiWilson - Do let us know what you think of the material in relation to your work!
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Hi Irene - Welcome! While we are not moderating the chats daily I hope you'll still find this course useful and engaging.
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Marian Krawczyk replied to Marian Krawczyk
@AileenPalmer you are most welcome - engaging with everyone through this course is one the favourite parts of my job.
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Marian Krawczyk replied to Irene Calaizis
If you'd like to chat further about this, you know where to find us!
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Marian Krawczyk replied to Laurèl H
@LaurèlH - that's an ambitious path! I hope you find the materials relevant and engaging.
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Marian Krawczyk replied to Clare Lawrance
I enjoyed your thoughtful comments @ClareLawrance - enjoy Week 3!
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Marian Krawczyk made a comment
We are now at the end of Week 2.
We've covered a lot of ground in these two weeks, and I very much enjoyed having a chance to read through your comments and to engage in conversation with some of you.
I now turn you over to the excellent hands of my colleague Dr Naomi Richards, who will accompany you through Week 3.
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@JoanOlokomeOtaru - Would you be interested in sharing/discussing that dread with strangers who might also feel the same way, or maybe have other views you might find reassuring, informally over cake and tea? Or is this not for you?
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Let us know about your experience if you check back here @MollyClery
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A very articulate response @EdwinaMcEachran.
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@JoanOlokomeOtaru - There's some interesting research with people who attend which finds that the majority of people only go once or a few times and they do not report any increase of fear, depression, or anxiety. Often the opposite, reporting feeling more connected to others and invgorated for being able to share their thoughts and perspectives.
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@ClareLawrance I hope you make it to one as there's quite a few happening worldwide, and the website will help you find one.
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Marian Krawczyk made a comment
Many commenters here see the value of the role but not the name. While there are some potentially clear benefits to a name change, what might be some of the drawbacks? @MollyClery @SusanCornish @RachaelEnkel
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A really interesting comparison @ChescaB about the normative power of 'natural' in the two different contexts of birthing and dying.
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That's an excellent questions @JoanneMutjavikua. There are different possible pathways between community-based and professional-based care. What would you like to see the relationship between the two as?
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Marian Krawczyk replied to Joanne Mutjavikua
@JoanneMutjavikua - glad you found it useful!
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@GillianWilson - You've identified many of the key tensions of trying to develop compassionate community initiatives in the UK (and the Global North as a whole).
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A great example @CarolaSalazarNorambuena.
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@ClareLawrance - You are highlighting the importance of time, and the requirement of (not always organized) time in order to develop relationships.
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Marian Krawczyk replied to Aileen Palmer
@RachealEnkel - You may find the following useful as it links to a range of different tools and resources for people and communitites interested in developing their own practices and programs. https://eapcnet.wordpress.com/2020/05/14/building-compassionate-communities-a-new-resource/
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Marian Krawczyk replied to Racheal Enkel
If you have a moment feel free to link any resources or media about this initiative.
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Marian Krawczyk replied to Racheal Enkel
This is a great example @RachealEnkel - thanks for sharing!
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@ClareLawrance - equity and inclusion issues at the end of life are very important indeed!
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@RachealEnkel - what small gestures can you think of that individuals might be able to do?
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Involving community members is absolutely key to any kind of planning!
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@SusanCornish - Yes, the role of geography remains key in these concerns.
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Marian Krawczyk replied to Melina E
You bring up an important point here @MelinaE - the 'siloing' within healthcare systems and the lack of continuity of care across settings.
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Marian Krawczyk replied to Yabin Lu
You provide a good 'starter' blueprint for action @YabinLu - who do you think would be best placed within the community to begin mapping the community need for palliative care?
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@CarolaSalazarNorambuena - that's a very interesting framing of Dr Kumar's talk.
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Those are some excellent ideas @IsabellaC .
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I believe it was recorded in 2018.
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You raise some key issues @ChescaB - the medicalization of every day care and the rise of autonomy as an unquestioned moral good in the Global North both have serious consequences.
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@JoanOlokomeOtaru - This is an extremely important point you bring up; in particular what is now known as the 'Kerala Model'. https://en.wikipedia.org/wiki/Kerala_model
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That's an admirable goal @YamCaplan. There are many examples of compassionate community intitatives in different parts of the world - I hope this is just the beginning of your exploration!
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@RonaldValentine - you may find the following example interesting: https://compassionateneighbours.org/
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Marian Krawczyk replied to Trish D
Hi @TrishD - You are right about the challenge in trying to answer the question and scholars have been debating this for a long time. You've identified many important levels of community!
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Marian Krawczyk replied to Marion Ward
Excellent point - that the concept of community is context-specific.
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Marian Krawczyk replied to Georgina Taylor
You bring up an important distinction that is sometimes discussed unreflexively framed as a 'polarity' in care - community versus hospital.
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You rightfully highlight the importance 'social capital' - the idea that community requires a sharing - of identity, norms, values, and trust, as well as the requirement of 'linchpin' people who connect through both horizontal and vertical relationships.
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Marian Krawczyk replied to Ronald Valentine
@RonaldValentine does your hospice participate in any compassionate community initiatives?
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Marian Krawczyk replied to Susan Cornish
I've notified FL @SusanCornish - I'll let you know once fixed.
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Marian Krawczyk replied to Clare Lawrance
A very thoughtful (and thorough) response.
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Marian Krawczyk replied to Moira Hill
Hello @MoiraHill - I will be very curious to see your thoughts of the material given the diversity of your experience and expertise. Welcome!
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Welcome @AlexandraP - I hope you find this course useful to your goals!
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Marian Krawczyk replied to Yam Caplan
Hello Yam - Great to see a graduate of GwG here. Please let me know what you think of this course.
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Marian Krawczyk replied to Colin Gillespie
These trajectories have been extrodinarily influential @YabinLu and they are foundational to much medical teaching and palliative care policy development.
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Marian Krawczyk replied to Yam Caplan
Ah, this is very much echoing Cicely Saunders, the founder of UK hospice movement! Here's an old video (1983) of her speaking very much exactly to these concerns: https://www.youtube.com/watch?v=KA3Uc3hBFoY
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Marian Krawczyk made a comment
That brings to the close of Week 1. I'm glad to see such engaged conversation throughout the week and l look forward to reading your thoughts next week which focuses on community approaches to end of life care.
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@RonaldValentine - what you describe sounds like end-of-life doulas!
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I think we have quickly forgotten how frightening and overwhelming the first stages of the pandemic were, and how impossible it seemed to support people's relations and autonomy while also protecting others. May we learn from our past mistakes.
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Marian Krawczyk replied to Cristina Gias
@CristinaGias in Canada there is hospice both at home and within health care settings, often seperate from palliative care in hospitals (focused on acute needs). In the US more hospice care is provided at home than in institutions and again sometimes seen as somewhat distinct from palliative care.
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The history of Western hospices until the 20th century is a fascinating one.
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@YabinLu An important question to ask as palliative care was developed within the hospital setting by Balfour Mount in Canada, whereas contemporary hospice, first developed by Cicely Saunders in the UK was a standalone structure.
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Marian Krawczyk replied to Yabin Lu
You've packed a lot of reflection into your response! Although somewhat orthogonal to the discussion, your statements about doctors having difficulty in making judgements made me think of this article:
Robots and the future of dying
https://nuvomagazine.com/culture/robots-and-the-future-of-dying -
Marian Krawczyk replied to Ronald Valentine
The temporal component you identify here is an important question - when does living become dying? Perhaps, as you note, we need better language to describe ambiguous transitions.
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There is absolutely an entanglement between the functions of 'hope' and 'denial' at the end of life for everyone involved (the person who is at the end of life, their social networks, health care providers, etc.). You may find the following free article, written by one of our colleagues, of interest:
Between hope and acceptance: the medicalisation of... -
That is a powerful example @SusanCornish .
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An important insight here about the potential relationship of health care workers' experiences.
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Excellent reflection @MelinaE - particularly your insights about the temporal (and therefore potentially shifting) biopsychosocial aspects of dying.
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A thoughtful reply @JoanOlokomeOtaru - As you point out, autonomy at the end of life may not be a reasonable pre-condition for dignity.
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@EdwinUrielGomezAvila - can there be a good death without euthanasia?
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Yes - and at times a good death requires a lot of paperwork!
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One way that psychology would frame this distinction is between the intrapsychic (between aspects of self) and interpersonal.
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Absolutely - several studies have strongly correlated Christianity with increased wishes for life-prolonging therapy.
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Marian Krawczyk replied to Ronald Valentine
A very thoughtful reply @RonaldValentine. As devil's advocate, can people who are existentialists (believing in nothing after death) have a good death, metaphysically speaking?
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Marian Krawczyk replied to Susan Cornish
You've hit on a very important aspect @SusanCornish - the concern about fear.
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Marian Krawczyk replied to peter bailey
As you've identified, a lot of what is understood as a good or bad death is dependent on context!
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Marian Krawczyk replied to Yabin Lu
The term 'conscious dying' is being increasingly being used to describe your first point @YabinLu.
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Marian Krawczyk replied to peter bailey
@peterbailey - Can you tell me a bit more about what you were shocked by?
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@JenniferReid-Simmons - the PPS is an excellent example situated in everyday practice. Perhaps the removal of social context is both unintentional and (somewhat subconsiously) intentional as it makes complex situations apparently easier.
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Marian Krawczyk made a comment
You may all find the recently published "Value of Death" report by the Lancet Comission very interesting in answering this quesiton about how death systems within the global North have grown and changed over the last 100 years. You can do download it for free here: https://www.thelancet.com/commissions/value-of-death
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Marian Krawczyk replied to Michelle Dodds
Yes, you're on the button that the pandemic has further distilled our pre-existing social norms in relation to dying and death.
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Marian Krawczyk replied to Michelle Dodds
Ah ha - due to your experience, you're anticipating the materials from the next step!
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Marian Krawczyk replied to Aileen Palmer
A thoughtful reply @AileenPalmer. To play devil's advocate is dying (as opposed to death) a process that all life goes through? Can you think of any exceptions?
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Welcome @ClareLawrance - Please do let us know if and how the course shapes your own perspective.
