Book Announcement | The Examined Illness: A Philosopher's Confrontation with Deadly Disease

The Examined Illness

Intellect is pleased to share that The Examined Illness: A Philosopher's Confrontation with Deadly Disease, by Darrel Moellendorf, is out in paperback and hardback.

A visceral personal memoir of being seriously unwell – and the consolations of philosophy during sickness. Being a patient is part of being alive. Disease and serious illness often strike randomly, and when they do, we quickly become subject to the impersonal forces of biochemistry and pharmacology. We rarely think about sickness beforehand and are often totally unprepared for it when it happens. Suddenly, there we are, subject to a standard treatment protocol. Darrel Moellendorf learned this by experience during a month confined to a solitary and sterile hospital room where he received a life-saving stem cell transplant. His room was somebody’s workspace, his schedule was somebody’s work routine, his immune system was systematically crushed, and his prognosis was out of his hands. There was no assurance that it would all work out.

Having spent thirty years teaching philosophy to college students, He was facing the biggest test of all—perhaps the final exam. These are his reflections before, during, and after his cancer treatment, written in real time. He writes, “My brain was sometimes addled by the chemotherapy that sapped my energy and destroyed my immune system, but I wrote out of the conviction that living well includes living well with disease, and eventually living well facing death.” This memoir expresses the conviction that the virtues of patience, courage, trust, and hope serve us well. A measure of good humor also can’t hurt.

Part of the Global Health Humanities series.

Table of Contents

Acknowledgements
Introductory Note

Part I: Diagnosis
1. First Thoughts and Second Opinions
2. Healthcare for All Pt. 1
3. Patients and Patience
4. Father to Son and Back
5. Give It Up for Lent!

Part II: Inside
6. Day 7: The Countdown Begins
7. Day 6: Carpe Diem
8. Day 5: Vegetarianism Is Not an Option
9. Day 4: Sweatin’ and Shakin’
10. Day 3: Making Decisions When You Can’t Think
11. Day 2: Nausea and Fatigue
12. Day 1: Courage
13. Day 0: Communion
14. Day +1: Confinement
15. Day +2: Waiting and Anxiety
16. Day +3: Relaxed
17. Day +4: Toiling and Spinning
18. Day +5: Healthcare for All Pt. 2
19. Day +6: Patience and Hope?
20. Day +7: A Letter Arrives
21. Day +8: Anaemia
22. Day +9: Why I Write
23. Day +10: Why I Dyed My Hair Blue
24. Day +11: Shorn
25. Day +12: Tired, Itchy, and Hiccupping
26. Day +13: Waiting
27. Day +14: Signs of Progress
28. Day +15: Turn Me Lose, Set Me Free
29. Day +16: Fresh Air
30. Day +17: Postponement

Part III: Recovery
31. Home Sweet Home
32. Home Update
33. The Social Determinants of My Survival
34. Letting the Days Go By
35. A Thread of Good Fortune
36. Magical Thinking
37. Hope Kept Me Eating
38. Sunshine, Suffering, Rebirth, and Freedom
39. Food Aversions
40. Inching Towards Normalcy
41. Human Fatigue and Canine Anxiety
42. Healthcare for All Pt. 3
43. Still Wearing My Helmet
44. Same as It Ever Was
45. Who Is That Masked Man?
46. Inspiration in the Oncology/Haematology Waiting Room
47. With a Little Help from My Friends
48. Springtime on My Face
49. Feeling the Love … and the Likes
50. Disease, Bodily Alienation, and Transhumanism
51. Dem Fingernails
52. Traversing the Rim of the Valley of the Shadow of Death
53. The Examined Illness

Epilogue: Living with Mortality
References

Please visit our website for more information:

www.intellectbooks.com/the-examined-illness

--

My source: Georgia Glasspole

Marketing Executive (she/her)

Intellect  | 0117 9589910 | georgia AT intellectbooks.com

On Sociology & Becoming a Patient

'The Subject matter of Sociology
& Becoming a Patient'

A primer for my picking up Hodges' model, or being pressed onboard, was early exposure to history and sociology. There was an understandable emphasis in the (then) school of nursing (registered mental nursing) on the role of society, social history, lunacy and the asylums, law, and attitude towards mental illnesses.

Continuing to sort books (inc. secondhand) and papers, there is:

Maclean, Una. (1974) Nursing in contemporary society. London: Routledge & Kegan Paul.

https://wellcomecollection.org/works/qhqc24fv

individual

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INTERPERSONAL : SCIENCES

humanistic -------------------------------------------  mechanistic

SOCIOLOGY : POLITICAL

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group-population

'The sociological viewpoint can be taken on many different subjects. Thus, political sociology has to do with people's voting behaviour and their reactions to the processes of government, while the sociology of education takes into account the influence of various social factors upon educational opportunities and achievements. In addition, social psychology, social psychiatry and social medicine are all related to medical sociology. These terms all imply the use of sociological methods and insights in different areas of human behaviour, and the divisions between them are a convenient way of dealing with what is a very wide territory. Such divisions may suggest that events and things in the real world are already separated in themselves, whereas the divisions are actually in the minds of the people who make them. It is easier to regard sociology generally as being the study of people's behaviour in groups, groups of all kinds, large and small, casual or permanent, groups of which people are very conscious as well as those of which they may scarcely be aware. Thus, much of sociology is concerned with the human family, a group whose form and composition varies from one part of the world to another and from one set of people to another but which does have common features and functions wherever it is studied. The family will be referred to repeatedly in this book, since not only does it affect all our lives but it profoundly influences the way in which people react in relation to illness.' pp.8-9.

Maclean pointed to the 'innumerable other human groupings' (p.9) and how these - family, schools, clubs, professional training, friendships, audiences, tourist crowds, customers, villager, hostel dweller; such groupings, some historic, temporary or transient - also differentiate into populations, that inform epidemiological and demographic studies. 

It is remarkable how societies have changed globally, since Maclean's 1974 text.

As if to presage the one-to-one encounters to follow, chapter 2 'Becoming a patient' after a brief history 'sickness' arrives at the work of the American sociologist Talcott Parsons.

I don't have the date but I remember making a note the four combined conditions at work for an individual to adopt the sick role. What stood out was how something we think is individually determined is social and so often a question of permission.

Maclean's text (with my emphasis) on these factors follows; and is then mapped to the domains of Hodges' model:

'In the first place, the illness must be outside the patient's control, in no sense his own fault. Second, the sick role will allow him exemption from his other roles. with their associated obligations and duties. For example, a man can legitimately give up work and leave his usual family 'responsibilities to his wife. But, third, the sick role requires that the patient should positively desire to get well, he should not relish the relinquishment of responsibility and, fourth, he has the obligation to seek competent medical help.' p.25.

individual

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INTERPERSONAL : SCIENCES

humanistic -------------------------------------------  mechanistic

SOCIOLOGY : POLITICAL

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group-population

the sick role requires that the patient should positively desire to get well	the illness must be outside the patient's control, in no sense his own fault.
the sick role will allow him exemption from his other roles. with their associated obligations and duties	he has the obligation to seek competent medical help

Again as an exercise you might care to reflect on this and our experiences since the millennium?

What is most remarkable is the need to view this as a 'future lesson' in terms of how societies must, will change to meet the challenges of tomorrow, and the day after that ...

ImROC: Briefing Paper 24 - Recovering Adult Acute Psychiatric Inpatient Wards

"Explanation, compassion and a holistic understanding of the person’s situation are critical (Royal College of Psychiatrists, 2017)." p.39.

(my emphasis)

"It requires practitioners to critically reflect on their values, beliefs, and biases and actively work to reduce as far as is possible the oppressive systems and practices within inpatient wards." p.15.

What models / frameworks for/of care do practitioners use? 

What models invite - are primed for:

• critical reflection (individually, or as a group, p.56)?
• recognition of oppressive situations, phenomena, ethical dilemmas?
• citizenship - citizenry (p.18)?
• deciding whether it is a journey, or not?
• a possible role in burnout (p.54) mitigation?
• reflection, development, and restoration (p.56)?
• are all models situated?

Individual
   |

      INTERPERSONAL    :     SCIENCES               

HUMANISTIC  --------------------------------------  MECHANISTIC      

 SOCIOLOGY  :   POLITICAL 

|

Group

neurotypical neurodivergent/autistic [Yes.] Can what has been stressed for decades - compassion, listening, validating, empathy, rapport, the therapeutic alliance, seeing the person ... in mental health nurse education, theory and practice, be strengthened through review of skill-mix, and workforce? Whilst, in-turn, being sensitive to the pressures on mental health RNs, as cohorts of students, seek to assure their learning experiences; and as qualified nurses old and new seek to protect their professional identity, values, standards, and ethics - responsive to the demands of the 21st century.

close to home transport physical environment: noise, smells, space, decor, light.. While (originally?) aimed at elective in-patient care, the mantra of discharge planning begins upon admission (even before) has reached mental health services and community mental health teams. Even as the reduced number of beds (perversely) provides ideal conditions, this should (must) not mean the 'game' becomes 'pass the parcel', 'musical chairs' - the person lost in the many processes.

Hell is other people - as the saying goes ... When the therapeutic value and potential of relationships are recognised, the need for a tool to identify and critique what is relational is even more critical. Not just to realise what has long-been psycho-social, but the 'alt-def' of person-centred. This demands simultaneity in assurance. We contrast the humanistic with the mechanistic - service-centred. Let's not forget the need for integrated** care. See community/society as the safety net it can be. So DO NOT: raise a patient's / family's expectations (p.49) only to let them down.

least restrictive Let's not re-learn the lessons of history, but if you insist...?^ One mention of (social) 'determinants' (p.37)! Please take a look out of the [safety] window; and beyond the APPG Committee room...  Wither ambition, courage in policy - to discover what is evidence-based (the lesson since 5th July 1948)? In-patient care is too late.* For sustainable health services and systems we need to act sooner, educate, to try to address all the determinants. Please remember what 'you' (through policy..) have done to the patient as a concept: patiency. <- Recovery carries political heft.

Please remember what 'you' (through policy..) have done to the patient as a concept: patiency. Recovery carries political heft. No one wants to create, foster, instill dependency, but (emotional labour) care delivery demands space and time: being with, or at least available.

*If this was the guiding principle for all disciplines, stakeholders, policymakers, researchers could this:

• place emphasis (again) on prevention; staying well - relapse prevention;
• help generate alternate modalities for therapy / care;
• help concentrate services to deliver person-centred, recovery and trauma informed in-patient experiences - where therapeutic outcomes are  at least feasible/possible;
• begin from literacy-first stance: take up educational focus in schools - PSHE, work-place;
• health career - life chances?

**physical-mental, care context, philosophy of care - trauma - recovery - strengths, funding, disciplines, pastoral, health - social care - housing ...

^Dept. of Health. Caring for people: the CPA for people with a mental illness referred to specialist mental health services. London: 1990

Joint Health/Social Services Circular  C(90)23/LASSL(90)11

Rachel Perkins, Sharon Gibbard, Yasmin Blackwood, Simon Barnitt, Lowri Smith, Anna Cheetham, Poppy Repper, Anne Rackham, Ben Dorey, Jo Luck, Julie Repper. Recovering Adult Acute Psychiatric Inpatient Wards: Creating Recovery-Focused, Trauma-Informed and Neuro-Inclusive Culture, Relationships and Practice. ImROC. Briefing Paper 24. 2024.


See also:

ImROC (2023) Thinking about Recovery Together

ImROC (2023a) Team Recovery Implementation Plan for Acute Inpatient Wards

Wand, T. (2024), We have to cancel psychiatric nursing and forge a new way forward. Int J Mental Health Nurs. https://doi.org/10.1111/inm.13301

Warrender, D., Connell, C., Jones, E., Monteux, S., Colwell, L., Laker, C. et al. (2024) Mental health deserves better: Resisting the dilution of specialist pre-registration mental health nurse education in the United Kingdom. International Journal of Mental Health Nursing, 33, 202–212. Available from: https://doi.org/10.1111/inm.13236

Plus:
Jones P. (2014) Using a conceptual framework to explore the dimensions of recovery and their relationship to service user choice and self-determination. International Journal of Person Centered Medicine. Vol 3, No 4, (2013) pp.305-311.

COVID: Logic is the patient - again...

Hodges' model is evidence seeking, what logic might apply? 

 

Logic was once the 'patient':

“Yet, by 1530, formal logic was a dying branch of studies, and by the seventeenth century it had been completely forgotten. Why? No one to my knowledge has provided a satisfactory answer. Prantl, one of the earliest scholars to take notice of medieval logic, merely relied on the prejudice of four hundred years in depicting the universities as nursing; the sick but obstinate patient (dialectics), until 'the healthy spirit of antiquity conquered the scholastic pedantry'. Bochenski is not concerned with the mechanics of historical change. Ong gives the cause of death as an inherent weakness in medieval logic itself: 'Scholastic logic was dying of the frustration attendant upon its failure to develop a symbolic system adequate to its ambition and the promise of its initial development.' Even if medieval logic could not overcome this weakness, it had nevertheless hobbled along for three hundred fifty years with the malady! Even if the universities artificially prolonged its life, how exactly did the 'healthy spirit of antiquity' do away with the old warrior?” (Heath, 1971, p.47).

 

Individual
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INTERPERSONAL : SCIENCES

humanistic ------------------------------------------ mechanistic

SOCIOLOGY : POLITICAL

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Group

logic	LOGIC
logic	logic

Heath, Terrence. “Logical Grammar, Grammatical Logic, and Humanism in Three German Universities.” Studies in the Renaissance 18 (1971): 9–64. https://doi.org/10.2307/2857078.

Self-Care Week c/o Herakut

If, when you see, or hear of Hodges' model, you think 'Oh, that's about dividing the world up, putting things - including people! - into boxes.'; I'd request you to please reconsider?

Hodges' model, the two axes, the four care - knowledge domains or quadrants can be thought of as a temporary home. It's like a tent. No, it's actually more simplified than that. More like a bivouac. A shelter that needs to be constructed not with ready-to-hand materials and terrain, but what can be - ready-to-mind.

This construction makes use of two 'sticks' to form the model's axes. A key element too are the dichotomies - polarities - oppositions - continua that the model can reveal with a situated search. This search can variously be local, regional, global, or glocal (as I explained earlier this week - to follow).

This past week has been Self Care Week and the resulting bivouac is an idea-l-isation; a temporary home for a person and a group.

On twitter @SelfCareForum featured the 'continuum of self care':

The Self Care Continuum

Using Hodges' model, reflection on the above picture soon demonstrates the scope of the model. You can navigate the full range of care displayed above. There is however much more to discover.

Amid the ongoing pandemic, we've recognised anew, or afresh, the importance and value of the outdoors, nature and the environment in all its forms. Recently, I've had to take walks with patients/clients in the community, being unable to take in the aspect of assessment that stepping indoors usually provides.

Personally, for many of us, self care is predicated on the care of others: children, older parents, friends, colleagues and the community. A parent you haven't hugged, or kissed since March 2020.

Infants and children are missing out on truly formative years of schooling and teenagers on socialisation. Apparently, among the young, eco-anxiety is a real phenomena, whether it is debated as an unsurprising fact of 21st century life, or a medical problem.

Hodges' model is much more than axes, continua and boxes. While as shown on this blog (since 2006) Hodges' model is made up of several axes and dichotomies, the model's boxes provide the means to weigh the evidence. The model can help that a given situation and context is considered holistically (parity of esteem in physical and mental health) and in a person-centred way. Then, having fulfilled their purpose, we can collapse the boxes, the bivouac and carry forward the conceptually integrated care.

To deal with eco-anxiety, we need tangible signs of social and political progress, as action is taken to tackle the climate crisis. Physical evidence is the best emotional therapy of all. Just imagine when the news media reports that CO₂ has decreased, sea-level rise is slowing, plastic and air pollution are reducing.

When will that be?

I'm not sure and as with COVID-19, the uncertainty is a collective and protracted pain.

As the arts continue to inspire us, there is no doubt that caring for self and all are now inextricably linked: from self-care to planetary health.

What do you think - Self Care Tree Girl?

 

 individual 

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INTERPERSONAL : SCIENCES

humanistic ----------------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

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group

 

Self Caring Tree Girl, 2020

 

My sources: And with many thanks.

Herakut

Self Care Forum

See also:

Or if you have plenty of time, @WoncaWorld also has a full webinar to watch and consider. Environment & Healthy recovery https://t.co/iNepXRhUZD via @YouTube pic.twitter.com/hyTVQgJLEq

— SCwE (@SelfCareWeekEU) November 21, 2020

Call for Papers: Ethics, Health Data, and Bio-Citizenship

CFP: PhilosophicalNews, vol. 22, 2021

Ethics, Health Data, and Bio-Citizenship

http://www.moralphilosophy.eu/cfp/cfp-no-22/

Submission Deadline

Full paper: January 1st, 2021

Aims and Background

Adriana Petryna first introduced the term “biological citizenship” in her ethnography of the aftermath of the Chernobyl post-disaster emergency, Life Exposed [Petryna A. 2002. Life Exposed: Biological Citizens after Chernobyl. Princeton, NJ: Princeton University Press.]. As stated by Rose and Novas, biological citizenship can be defined as an active form of citizenship that produces new forms of belonging, claims to acknowledgement of experiences, and access to resources revolving around biological and medical claims. Within this frame, the “emergency” refers to those “emerging forms of life” and introduces a new element into the philosophical, ethical, and sociological reflection: something which arises from the intertwining of modes of theoretical thinking and moral agency pertinent to different areas – medical, legal, economic, political, moral – and is not directly postulated by any of them; something whose characteristics can be identifiable, but whose result cannot be predicted. Several factors have contributed to defining the concept of biological citizenship. These include:

1.         A gnoseological expansion leading to a proliferation of disease categories in the biomedical field;

2.          New forms of bio-sociality emerging in connection with the increase in rare diseases;

3.         The consolidation of new biopolitical systems and new forms of governance;

4.          The rise of new political and moral economies of hope;

5.          An increased relevance of patient associations in decision making.

However, biological citizenship should not be constructed merely as a resurgence of the medicalization of life (Foucault), or a form of liberalization and privatization of eugenics (Habermas). In this context, this special issue aims at investigating the multidisciplinary background of the expanding moral claim to bio-sociality and bio-citizenship. As a matter of fact, being a bio-citizen carries an underlying demand for more suitable public policies and socio-economic rights to shape the universalization of fragility and vulnerability as human conditions in contemporary society. On the one hand, bio-citizenship may therefore be viewed as a proactive proposition for patient-centred healthcare within an enlarged framework of cultural and political meanings: the patient is no longer a subject, who happens to suffer from a specific impairment at a specific moment in time; rather, being a patient is a universal condition, shared by all human beings. The idea is to move from a generally negative perception of the term “patient” to a neutral or positive perception of the same concept. On the other hand, however, biological citizenship also implies an underlying and constant connection between the patient status and the involvement of health data in order for patient-centred technologies to run efficiently. This entails new (cyber) risks and vulnerabilities that might not only impoverish the empathic and emotional quality of the care relationship, but also favour a concept of democratic citizenship based on Big-data-oriented sovereignty, thus paving the way from bio-citizenship to bio-data-citizenship. This idiosyncrasy is very evident in the ongoing global experience of the COVID-19 pandemic. We are learning how contingent the necessity is to rethink the link between ethics, Big data, patient empowerment, and healthcare technology.

Original contributions discussing issues such as gender, big data, biocitizenship, or any other relevant topic will be considered, subject to approval by the Editorial Board.

Submission Details

•             8000 words (spaces included)

•             Each text has to include an abstract written in English, 300 words max.

•             All material should be submitted via e-mail to the special issue’s editors Antonio Carnevale (a.carnevale AT cyberethicslab.com) and Emanuela Tangari (e.tangari AT cyberethicslab.com).

The volume will be published in June 2021.

For further information as well as the submission of the paper, please refer to the guidelines or visit http://www.moralphilosophy.eu/cfp/cfp-no-22/

The Rosamund Snow Scholarship for Patient-Led Research

INDIVIDUAL

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INTERPERSONAL : SCIENCES

HUMANISTIC ----------------------------------------------- MECHANISTIC

SOCIOLOGY : POLITICAL

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GROUP

(real) Subjective? Rosamund Patient / Carer's experience (real) Qualitative?	Subjective ------ Research ------ Objective Disciplinary - Professional  language and jargon Change Qualitative ------ Research ------- Quantitative
Snow, PhD "The Sociology of health and illness" Patient-Led Research Co-Production of Research 'What happens when patients know more than their doctor?' Medical sociology	Unequal power dynamics of the clinical consultation The politics of self-management Challenges of advocacy Scholarship Funding

The Rosamund Snow Scholarship for Patient-Led Research

"Rosamund Snow, who died in February 2017, had type 1 diabetes. After completing a Master’s degree in Social Sciences at King’s College London, she went on to study for a PhD in the patient experience of diabetes. She became a respected academic at the University of Oxford, undertaking research and teaching medical students about the importance of the patient perspective. She believed passionately in patients working alongside clinicians to produce research and teaching that is informed by the (often under-valued) expertise in what it is like to live with an illness. She used her own expertise from experience to question and challenge norms of medical practice, always striving to improve patient care. After her death, Rosamund’s family generously donated funding to Green Templeton College at the University of Oxford, to allow others to be trained to continue the work she started." [ Source: #RSSPLR ]

My source: with thanks @trishagreenhalgh

Reflecting on Nortin Hadler's "Missing the Forest For the Granularity"

I read Nortin Hadler's Missing the Forest For the Granularity (July, 2014) on The Health Care Blog with great interest. The article draws attention yet again to the risks and preoccupation with processes and systems. This provides me with another opportunity to highlight the 4P's within Hodges' model: Process, Policy, Practice and Purpose and add some of the points that Dr Hadler addresses.

The 4Ps by themselves might have meaning but they can't do work. For that we need a context and several perspectives. As Dr Hadler points out big data intrudes on the clinical encounter determining not just what is collected, but how it is captured and structured.

There are frequently two datasets at the practitioner level: one is administrative and managerial in form and purpose; the other is clinical - patient, person centered. Effective communication already presents a challenge. On top of that then how relevant are the IT systems. The holy grail of IT systems still seems to be benefits for clinicians and patients - the public. Until then will the IT continue to push the patient-clinical relationship as if it is some wobbly toy? You bet it will!

Where exactly should the “Physician’s Dashboard” reside? Is it a case of "the ayes have it" but only on the right?

Nortin also refers to the United States postponing ICD-10. From Wigan Pier I clearly do not understand the issue, but this seems from here more like a very prolonged delay. A delay that perhaps says more; not just about the healthcare 'system(s)', but the many interfaces to be found there.

Many thanks to Dr - Prof. Hadler for his article:
https://thehealthcareblog.com/blog/2014/07/11/missing-the-forest-for-the-granularity/

individual
INTERPERSONAL : SCIENCES

humanistic ------------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

group

“cognitive” specialists, the care of the patient revolves around the “granularity” of the narrative. PURPOSE individual attention and focus ability to share purposes  Using individual differences and idiosyncrasies	patients as widgets (here)? Can you see the dashboard here? PROCESS  data gathering big data, ICD-10 Electronic Medical Record -  templates and “smart sets”
PRACTICE Patient - BIG DATA - Doctor relationship  empathy 'NOISE' empathy life-course (“social”) epidemiology	POLICY Europe, health care systems, United States, health economists, hospital administrators, patients as “units of care”, physicians as “providers”, clinical demand = “throughput.” common denominators invoicing

Hodges' model - DSM V: the Politics of (Well-being (Health [Mental Health])) salience, books and domains

INTERPERSONAL : SCIENCES
SOCIOLOGY : POLITICAL

individual

Diagnostic and Statistical Manual of Mental Disorders (DSM-5) 'salience'  ‘Salience syndrome’ replaces ‘schizophrenia’ in DSM-V and ICD-11: psychiatry’s evidence-based entry into the 21st century? J. Van Os bereavement medical, bio-psycho-social, recovery model self-efficacy self-stigma DSM5 and Ethical Relativism Ultimate terminology:  self, person, patient, service user, client,  Mr, Miss .....	Diagnostic process 'Evidence', objectivity,  repeatability, validity, treatment, drugs Credit Heidi Cartwright, Wellcome Images
The history of DSM: APA : Wikipedia stigma social services social network (size, quality) anti-psychiatry social norms? Media: Books review - essay; Stevenson, T. (2013) Mind field, FT Weekend, May 25-26. p.8.	American Psychiatric Association APA Opinion - commentary: DSM-5: Caught between Mental Illness Stigma and Anti-Psychiatry Prejudice (was on Scientific American) Is Criticism of DSM-5 'Anti-psychiatry'? Goldacre: Bad Pharma .... and much more...

group - population

See also:
WHO History of the development of the International Classification of Diseases

Image: http://wellcomeimages.org/

International Nurses' Day 2013: "The drama of it All"

There is a new nursing drama series starting on BBC TV next week - Frankie:

District nurse Frankie Maddox is a saint. At least she would be if it weren’t for her fondness for red wine, loud music, ghastly singing and fast cars.

Whether it’s an elderly man with dementia, a pregnant woman whose husband is on duty in Afghanistan or a sickly young child who’s never at school, nothing is too much trouble for this caring, smiley character. “Why do you always insist there’s something we can do, when sometimes there isn’t?” snaps Dr Evans (Jemma Redgrave). Because “the world is my patient,” Frankie explains, although she has the grace to grimace after delivering such a clunking line (from Radio Times).

That line may be clunking as a piece of dramatic prose, but there is a need to make some noise that extends beyond nursing's one-to-one encounters.

We are well aware of the challenges that the NHS faces, the themes are well known and read like a script that is increasingly played out on wards, the media and in parliament. The latest playwright is Francis. This is the drama we cannot ignore locally.

What of nursing globally on IND 2013?

The nursing communities within the various nations must also listen to the world. We can make a difference as individuals by challenging our often parochial perspectives; by trying to travel, seeking to engage with others electronically and learn what global nursing organizations are doing on our behalf.

Best wishes to nurses everywhere.

International Council of Nursing

Global Alliance for Nursing and Midwifery Communities of Practice (GANM)

Global Health Network

HIFA[2015] ‘Healthcare Information For All by 2015

Global Health Workforce Alliance

Inaugural Symposium on Person-centredness in the Curriculum May 2nd - 3rd

Dates
Thursday 2 May and Friday 3 May 2013
(starting at lunch time on 2 May with a full day on 3 May)

Venue
Loughview Suite, Jordanstown campus, University of Ulster, Northern Ireland

The School of Nursing at Ulster has a strong tradition of national and international leadership in the field of person-centred practice. The Institute of Nursing and Health Research at Ulster incorporates the Person-centred Practice Research Centre directed by Professor Brendan McCormack. Against this backdrop the School has been developing a programme of work with a focus on person-centredness in nursing education. It is our contention that in order to achieve maximum effect in practice, person-centredness should be embedded within and across all programmes of education for health care professionals.

This year the School of Nursing at Ulster will host its Inaugural International Symposium on Person-Centredness in Nursing Education. The one and a half day symposium will include presentations and workshops that will appeal to those involved in nursing education in academic and practice settings.

Symposium themes 
The three key themes of the symposium are:

• To explore ways of infusing a culture of person-centredness through effective, contemporary higher education
• To share innovative approaches to the facilitation of person-centredness in practice learning
• To reflect upon how the experiences of teaching teams and service users and to consider how these can shape educational approaches and teaching strategies

Target audience
The symposium will be of interest to colleagues who have an interest in promoting person-centred practice through education in practice or academic settings.

To reserve a place or for further information please contact:
Julie Cummins at the Institute of Nursing and Health Research

-----

I plan to attend this event on a topic central to h2cm.

Manet & the art of nursing - never unresolved: (and The Francis report)

Yesterday I travelled to London for a nurse related meeting and used the opportunity from 8pm - 11pm to take in the Manet exhibition at the Royal Academy of Arts. Brilliant! It is a great event. There really is no comparison apart from the very high resolution close examination that our technology makes possible; but then that is a difference experience, a different purpose.

Manet's work at the RA includes paintings that do appear unfinished. Areas of the canvas being unresolved brings home the relationship and dependency of the artist with the subject, and the artist's approach to portraiture. Manet was quite demanding on his subjects apparently and while not completely averse, he did not routinely rely on the new opportunities that photography afforded. Here are some thoughts from the Art Fund website:

'Summer' or 'The Amazon', by Edouard Manet

Manet was a great risk-taker and critics of day rallied against his inconsistent approach, as you will see many of the works seem 'unresolved' or 'unfinished' but one of Manet's great skills was this ability to stop painting at the right moment, and it is this technique which gives the works a sense of movement and life.

Manet once said to his friend Antonin Proust, 'I must be seen whole. Don't let me go piecemeal into the public collections; I would not be fairly judged.' This exhibition, which brings together the largest selection of works by the artist to be exhibited together in a UK museum, is a great opportunity to judge Manet's extraordinary talent as a 'whole'.

In nursing we are accustomed to impatient patients. Many though have no choice but to 'sit' and 'lie'. They are static, not able to walk or run away.

Unconscious patients - we speak to them: redrawing the outlines. Searching verbally where we cannot go, reaching for the centers of personhood. We sculpt them back to their optimal health. Sometimes the brush strokes are urgent, sometimes we improvise with touch.

All the time an ideal: a portrait of care. No matter how busy we are basic nursing care should never remain unresolved.

That part of the canvas is always completed. The outline is integrated. The horizon, foreground, middle and background may be sketchy in the extreme cases, but the real mission critical bases are covered.

What we should never countenance, collude, or indirectly sanction are the cutting of those bases.

If we do the work of art is not just unfinished: it is corrupt.

The Francis Report

Anagram graphic c/o Wordsmith

Manet's 'The Amazon' from: Reproarte.com

Health in the Round - A paper Griffiths et al. ...

The quote below from Griffiths et al. highlights what might be described as health in the round. As the authors address: the rapid growth of online social networking for health, health care systems are experiencing an inescapable increase in complexity - they contrast disease-centred health care with patient-centred. In so doing they distinguish the mechanistic tendencies in health care systems with the humanistic. For me reading this section of the paper was a circumnavigation of health and social care domains of Hodges' model:

Good communication between doctors and patients has been widely recognised by professional bodies in North America (AAMC, 1999) and Europe (GMC, 2009) as essential to the delivery of health care and appears to contribute to healing (Street, Makoul, Arora, & Epstein, 2009). Stewart (2001) has argued for a shift away from disease-centred biomedicine to a more holistic patient-centred alternative. This approach encompasses: exploring the patient’s reason for consulting; developing an understanding of their context; finding common ground in problem characterisation and management; supporting health promotion; and enabling the doctor-patient relationship to continue (Stewart et al., 2003). Patient-centred practice reflects (Bensing, 2000) a set of social and political ideas about the nature of the doctor patient relationship (Mead & Bower, 2000), which, it could be argued, forms a complex system (Situngkir, 2004). p.2237.

Griffiths, F., Cave, J., Boardman, F., Ren, J., Pawlikowska, T., Ball, R., Clarke, A., Cohen, A. (2012). Social networks - The future for health care delivery. Social Science & Medicine. 75: 2233-2241.

End of Life Care (Pathways), Nursing and Thresholds

There is a controversy (was in Telegraph) that has been growing for some time, concerning the Liverpool Care Pathway for end of life care. This is a very demanding and yet rewarding aspect of nursing. I have experience of end of life nursing care in a non-specialist capacity, having worked on wards for older adults and being involved with people who have mental health and life-threatening physical health problems.

It pains me greatly not just as a scouser that something with 'Liverpool' in it should become a cause of distress, a center for debate and review. Is the pathway green and shady? Is it comprised of stepping stones, with room for two, and with time granted for your next step? Or is there a danger in some instances the path can become tarmac clad, without the succor of a services stop for basic sustenance? Can a pathway become a motorway? What does that sign say? "DON'T HOG THE MIDDLE LANE!"

What pains me seriously is that what can be a invaluable, evidenced based palliative care resource can be undermined due to the complexity of the generic and palliative care situation.

If we truly practice person-centered care then there are no care pathways.

Or, to put it another way: there are as many care pathways as there are patients and carers.

Whether you believe in social medicine, or private; whether you are laissez-faire, or leave such matters to a higher power there is no escaping the need for organisation - for order.

The mix and concentration of people, knowledge, resources and time dictates that tasks, roles and processes be delineated and assigned. We need to assure a given level of quality, and to predict things, not everything is as difficult as the weather: or death. Pathways can assist in specific contexts.

Is there scope for personalisation on a pathway? ...

Steps and pace can vary and to the left and right of center. There are many pathways though: some valid - evidenced, award winning; while others might be broad, narrow, twisted - to become a disorientating ethical loop...

Being placed on a pathway denotes a decision point, a threshold. We need to remember in all fields of health and social care practice that there are multiple thresholds to be taken into account, communicated effectively and revisited:

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

'me' - existence, resilience, assets, personhood, ethics, personal values, mood, personalised care, understanding of treatment, communication skills, self-expression, loss, orientation, observation, distress, psychological assessment, sedation, beliefs, choices, :theology PURPOSE	'me' - existence, feeding, nutrition, fluids,  evidence base, Liverpool care pathway, quality of life measures, referral thresholds, prediction, resilience, reductive - holistic assessment, medication, distance, where: home-hospital-hospice? pain management, decision locale, specialism, basic nursing care, resilience PROCESS
memories, good-byes, love, compassion, carer under stress, reassurance, counselling skills, meetings with family, empathy and rapport, patient and relative engagement, life history, relative's recognition that loved one is dying, care strategies,  patient experts, patient - carer experience, communities of PRACTICE	consent, advocacy, mental capacity,  integrated working, effectiveness, independent autonomy, service access, bed availability, health & nursing in the media, scope of nursing, scope of medicine, law, medicolegal issues, whistleblowing, complaints, formal review, appeals, organisation, argumentation, professionalism, ageism, POLICY (re-PURPOSED)

The relative position of concepts above does not indicate priority.

"The LCP is not the answer to all our needs for care of the dying but is a step in the right direction."

Marie Curie Palliative Care Institute
Liverpool Care Pathway for the Dying Patient (LCP)

Dame Fiona Caldicott to lead Confidentiality Review

Dame Fiona Caldicott has agreed to lead an independent from Government review of the balance between protecting patient information and its sharing, to improve patient care.

The Department expects to respond to the panel’s recommendations when the review publishes during 2012.

The recommendation for a review of the balance between protecting patient information and its sharing, to improve patient care was part of the Future Forum’s recommendations to Government on the modernisation of health and care.

... more.

My source:
IHTSDO CoP

Health & Social Care - Safe Record Keeping Project

Dear Member

BCS, The Chartered Institute for IT and the Department of Health Informatics Directorate (DHID) have launched a project to develop clear and easy to follow guidance for patients and the public on the subject of health and social care records.

The project will provide patients with advice on how to look after the health and social care records and other sensitive personal data that they are creating or health and social care providers are sharing with them. BCS is inviting individuals or organisations to tender for the contract to carry out this work.

Further information about the tender process can be found at: ...

Please do not hesitate to contact me if you require any further information.

Regards,

Dr Wai Keong Wong
Project Coordinator
BCS and DH project for safe patient record
w.wong AT bcs.org

My source: BCS, Dr Wai Keong Wong with thanks.

The Care Campaign

The Care campaign is a joint drive by the Patients Association and Nursing Standard magazine to improve fundamental patient care across the UK.



CARE stands for:

C – communicate with compassion
A – assist with toileting, ensuring dignity
R – relieve pain effectively
E – encourage adequate nutrition


The campaign recognises that everyone who goes into a care setting is entitled to these four fundamental aspects of care – they are a human right.

We hope patients, relatives and nurses will use this Care slogan as a care checklist. Patients and relatives can use it to pinpoint shortcomings in care; nurses can use it to articulate a case to their managers for more support, for example, more staff.

The Care campaign asks all nurses, nursing directors, chief executives and non-executive directors of NHS trusts to sign up to the Care Challenge so that ‘Care’ becomes a universal expectation for patients.

The campaign’s aims are:

• For nursing staff to adopt the Care Challenge, based on our four-point tool.
• To highlight obstacles nurses face in delivering the Care Challenge.
• For organisations to sign up to the Care Challenge.
• For patients to recognise the Care checklist and to use it to challenge poor care.
• To support nurses who expose failures to deliver the fundamentals of care.

Contact The Care Campaign: carecampaign AT rcnpublishing.co.uk

===========
Some thoughts:
What is crucial of course is what the above C. A. R. E. depends upon - and this has been considered within the campaign:

C: Attitude, self-awareness, professionalism and training in theory and practice.
A: Time and adequate staff assignment to enable patient - person-centred care not task allocation.
R: Time to observe and interact with patients and relatives - acknowledging patient reports and training in the recognition of pain and management. Pain management should not be incidental - neither should dignity and respect.
E: Too posh to wash - Too senior to help feed a patient, ensure they have a drink?

Patient? Client? Consumer? Some thoughts....

Below is an edited version of a response to an item posted on LinkedIn Working Nurses, the issue raised by Genevieve M. Clavreul, RN, Ph.D. is as follows:

One day I came across “The Martha Stewart Show” as it aired a segment dedicated to nurses and Nurses Week. It began with a brief discussion of the history of nursing over the past century or so, and I recognized many of the instruments from my youth and my early career in nursing. But what caught my fancy was how the nursing school representative, a nurse herself, continually referred to the patient as the “client,” and how she seemed to struggle while using the term, as if it was a foreign concept.

The replies thus far have already addressed this question and and its ramifications very well, reflecting the scope of experience and expertise of many working nurses. We have this issue in the UK - NHS also, indeed it is no doubt a global matter.

Mental health has 'client' and 'service user'. Health care IS a business, but a business that must be allied with professionalism. I know that goes without saying, but please bear with me. Use of 'patient' seems to denote dependency and not partnership and collaboration. Being a 'patient' you are compliant with your treatment, rather than concordant with insight into your care plan and the pros and cons of medication (intervention or non-intervention).

As nurses though we have a duty of care. Each nurse represents the profession and the terms we use reflect the values we hold in theory, practice and management (the business again).

On one level perhaps the multiplicity of terms reflects upon the complexity of health and social care and the many contexts 'nursing' takes place. The emphasis on 'recovery models', self-care, the expert patient, relapse prevention, well-being is a sign of the demographic trends and the rise of social media and e-health.

I understand that patiency is a key concept and question in formulating models of nursing: When does a patient become a patient and when does that period end? It is not wholly fashionable for nurses to act as advocates and yet I would argue that being in a 'business' nurses can / should / must advocate not just for the patient but for the health of the general population. Nurses should also look over their shoulder (that's business politics) and take cognizance of the first rule of first-aid. In this case you cannot be an advocate for personal, family, local, regional, national and global health if you become the casualty. By implication the profession - nursing - suffers too.

Will we reach a point were access to and the salience of 'patiency' as a - human currency - has to be enshrined in human rights? What title do we grant to our seniors in whatever environment: their home of twenty years, their hospital bed, their Room 123 of The Nursing Home?

In any business the ethos and strategy for success should be to make the 'business' transparent. I'm in London at the moment at an IT event. One presentation focussed upon the 'user experience' - UX. Customer service in health is essential [ CX - CareX ! ], but this should not be a 'business' add-on. This is crucial to all caring professions. Rather than be thrown from side-to-side by the science OR art of health and its client OR patient equivalent we can embrace the dialogue and make a positive difference as we do so.

The astute student / learner will ask the person concerned how they wish to be addressed. As future nurses and nurse leaders in the 21st century they might also consider those populations around the world who would very much like to hear the utterance of 'patient': not in reference to themselves, but their infants and children ...