Inequalities in healthcare – from denial to greater awareness

February 14, 2018

Pär SegerdahlSwedish law prescribes healthcare on equal terms for the whole population. Complying with this law is more difficult than one might believe, since discrimination tends to happen unknowingly, under our own radar.

Telephone nursing has been thought to increase equality in healthcare, because it is so easily accessible. However, research has demonstrated inequalities in telephone counseling. Callers are not treated equally.

Given the role of unawareness in the drama, this is not surprising. Despite the best intentions, treating people equally is very difficult in practice. What can we do about it?

If unawareness is a factor and discrimination largely happens unintentionally, I do not think we can conclude that it must be the result of a “bad system.” Even if discrimination arises unintentionally, it is humans who discriminate. Humans are not just their awareness, but also their unawareness.

In an article in the International Journal of Equity in Health, Anna T. Höglund (and four co-authors) investigates awareness of discrimination in healthcare, especially in telephone nursing. Swedish telephone nurses responded to a questionnaire about discrimination and equal treatment. The nurses’ answers could then be analyzed in terms of four concepts: denial, defense, openness and awareness.

Denial: some nurses denied discrimination. Defense: Some acknowledged that care was not always given on equal terms, but said that measures were taken and that the problem was under control. Openness: some of the nurses found the problem important and wished they could learn more about care on equal terms. Awareness: Some clearly saw how discrimination could occur and gave examples of strategies they used to avoid complex discriminatory patterns of which they were aware.

Rather than explaining unintended discrimination as the result of a “bad system,” these four concepts provide us with tools that can help us handle the problem more responsibly.

Anna T. Höglund proposes two complementary ways of viewing the four concepts. You can see them as positions along a line of development where a person can mature and move from denial or defense, through openness, towards the ultimate goal, awareness. But you can also imagine a person moving back and forth between positions, depending on the circumstances.

One recognizes oneself in these positions; unfortunately, not least in the positions denial and defense. The conceptual model developed in the article increases awareness of discrimination as largely a matter of our awareness and unawareness.

The authors add a fifth concept to the model: Action. If I understand them, they do not mean by “action” correcting a “bad system,” thereby controlling the problem. On the contrary, that would appear very much like expressing the defensive position above. (This indicates how much unawareness there is in many bureaucratic attempts to “control” societal problems through “systems,” to which one later refers: “We have taken appropriate measures, the problem is under control!”)

No, we need to continuously work on the problem; continually address ourselves and our patterns of acting. The conceptual model developed in the article gives us some tools.

Pär Segerdahl

Höglund, A.T., Carlsson, M. Holmström, I.K., Lännerström, L. and Kaminsky, E. 2018. From denial to awareness: a conceptual model for obtaining equity in healthcare. International Journal for Equity in Health 17. DOI 10.1186/s12939-018-0723-2

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New concept of consciousness challenges language

January 31, 2018

Pär SegerdahlA few weeks ago, I recommended an exciting article by Michele Farisco. Now I wish to recommend another article, where Farisco (together with Steven Laureys and Kathinka Evers) argues even more thoroughly for a new concept of consciousness.

The article in Mind & Matter is complex and I doubt that I can do it justice. I have to start out from my own experience. For when Farisco challenges the opposition between consciousness and the unconscious, it resembles something I have written about: the opposition between human and animal.

Oppositions that work perfectly in everyday language often become inapplicable for scientific purposes. In everyday life, the opposition between human and animal is unproblematic. If a child tells us that it saw an animal, we know it was not a human the child saw. For the biologist, however, the idea of ​​the human as non-animal would be absurd. Although it is perfectly in order in everyday language, biology must reject the opposition between human and animal. It hides continuities between us and the other animals.

Farisco says (if I understand him) something similar about neuroscience. Although the opposition between consciousness and the unconscious works in everyday language, it becomes problematic in neuroscience. It hides continuities in the brain’s way of functioning. Neuroscience should therefore view consciousness and the unconscious as continuous forms of the same basic phenomenon in living brains.

If biology talks about the human as one of the animal species, how does Farisco suggest that neuroscience should talk about consciousness? Here we face greater linguistic challenges than when biology considers humans to be animals.

Farico’s proposal is to widen the notion of consciousness to include also what we usually call the unconscious (much like the biologist widens the concept of animals). Farisco thus suggests, roughly, that the brain is conscious as long as it is alive, even in deep sleep or in coma. Note, however, that he uses the word in a new meaning! He does not claim what he appears to be claiming!

The brain works continually, whether we are conscious or not (in the ordinary sense). Most neural processes are unconscious and a prerequisite for consciousness (in the ordinary sense). Farisco suggests that we use the word consciousness for all these processes in living brains. The two states we usually oppose – consciousness and the unconscious – are thus forms of the same basic phenomenon, namely, consciousness in Farisco’s widened sense.

Farisco supports the widened concept of consciousness by citing neuroscientific evidence that I have to leave aside in this post. All I wish to do here is to point out that Farico’s concept of consciousness probably is as logical in neuroscience as the concept of the human as animal is in biology.

Do not let the linguistic challenges prevent you from seeing the logic of Farisco’s proposal!

Pär Segerdahl

Farisco, M., Laureys, S. and Evers, K. 2017. The intrinsic activity of the brain and its relation to levels and disorders of consciousness. Mind and Matter 15: 197-219

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Not knowing why

January 17, 2018

Pär SegerdahlOften we do not know why we think as do. We may like a drawing, but we cannot say why we think it is good. We may find it unpleasant that researchers study human embryos in petri dishes and then discard them, but we cannot say why.

Personally, I find not knowing why interesting and I do not mind spending ages without being able to state a single sensible reason. There is something fruitful in it, something secretly promising. But it can also drive people crazy. The strange thing is that you easily satisfy them by giving any idiotic reason, as long as it superficially sounds like “saying why.” It satisfies the intellect, which cannot understand how anyone can think something without a reason. It reminds me of a complaint about the neighbor’s dog: it often barks without reasonable grounds.

I would not be suited to participate in a TV debate program. The strange thing is that in such debates people really do behave like barking dogs, precisely by always giving reasons: “Your opinion is idiotic, because woof-woof, woof-woof!” – Debating is most likely overrated… but why do I think so?

Immediately satisfying the demands of the intellect seems unwise. Apart from committing us to opinions that must be defended, which makes it difficult to change, we are forced to give our thoughts premature form. They are prevented from deepening and surprising us.

A Chinese philosopher said, “To pretend to know when you do not know is a disease.” But the intellect forces us to pretend to know. The intellect goes insane if we do not exhibit this insanity.

Acknowledging that you do not know, and then giving yourself time, that is wisdom.

Pär Segerdahl

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The unconscious deserves moral attention

January 10, 2018

Pär SegerdahlLast autumn, Michele Farisco wrote one of the most read posts on The Ethics Blog. The post was later republished by BioEdge.

Today, I want to recommend a recent article where Farisco develops his thinking – read it in the journal, Philosophy, Ethics, and Humanities in Medicine.

The article will certainly receive at least as much attention as the blog post did. Together with Kathinka Evers, Farisco develops a way of thinking about the unconscious that at first seems controversial, but which after careful consideration becomes increasingly credible. That combination is hard to beat.

What is it about? It is about patients with serious brain injuries, perhaps after a traffic accident. Ethical discussions about these patients usually focus on residual consciousness. We think that there is an absolute difference between consciousness and unconsciousness. Only a conscious person can experience well-being. Only a conscious person can have interests. Therefore, a patient with residual consciousness deserves a completely different care than an unconscious patient. A different attention to pain relief, peace and quiet, and stimulation. – Why create a warm and stimulating environment if the patient is completely unaware of it?

In the article, Farisco challenges the absolute difference between consciousness and unconsciousness. He describes neuroscientific evidence that indicates two often-overlooked connections between conscious and unconscious brain processes. The first is that the unconscious (at least partly) has the abilities that are considered ethically relevant when residual consciousness is discussed. The other connection is that conscious and unconscious brain processes are mutually dependent. They shape each other. Even unconsciously, the brain reacts uniquely to the voices of family members.

Farisco does not mean that this proves that we have an obligation to treat unconscious patients as conscious. However, the unconscious deserves moral attention. Perhaps we should strive to assess also retained unconscious abilities. In some cases, we should perhaps play the music the patient loved before the accident.

Pär Segerdahl

Farisco, M. and Evers, K. The ethical relevance of the unconscious. Philosophy, Ethics, and Humanities in Medicine (2017) DOI 10.1186/s13010-017-0053-9

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Big questions do not have small answers

December 20, 2017

Pär SegerdahlSome questions we perceive are “bigger” than other questions. What does it mean to live, to be, rather than not to be? When does life begin and when does it end? What is a human being? Does life have a meaning or do we endow it with mere façades of meaning?

We do not expect definitive answers to these questions, except for a joke. They are wonderings that accompany us and occasionally confront us. We may then notice that we have an attitude to them. Perhaps a different attitude today than ten years ago. The attitude is not a definitive answer, not a doctrine about reality that dry investigations could support or falsify.

Bioethics sometimes comes close to these big questions, namely, when scientists study what we can associate with the mystery of living, being, existing. An example is embryonic stem cell research, where scientists harvest stem cells from human embryos. Even proponents of such research may experience that there is something sensitive about the embryo. I would not exist, we would not live, you would not be, unless once upon a time there was an embryo…

The embryo is thus easily associated with the big questions of life. This implies that bioethics has to handle them. How does it approach them?

Usually by seeking specific answers to the questions. Like super-smart lawyers who finally get the hang of these age-old, obscure issues and straighten them out for us.

Do you know, for example, when a human being begins to exist? Two bioethicists combined biological facts with philosophical analysis to provide a definitive answer: A human being begins to exist sixteen days after fertilization.

Incorrect, other bioethicists objected. They too combined biological facts with philosophical analysis, but provided another definitive answer: A human being begins to exist already with fertilization. The only exception is twins. They begin to exist later, but much earlier than sixteen days after fertilization.

The bioethicists I am talking about are proud of their intellectual capacity to provide specific answers to such a big question about human existence. However, if big questions do not have small answers, except for a joke, do they not deliver the answer at the cost of losing the question?

The question I am currently working on is how bioethics can avoid losing the questions we perceive are “bigger” than other questions.

Pär Segerdahl

Smith, B. & Brogaard, B. 2003. Sixteen days. Journal of Medicine and Philosophy 28: 45-78.

Damschen, G., Gómez-Lobo, A. & Schönecker, D. 2006. Sixteen days? A reply to B. Smith and B. Brogaard on the beginning of human individuals. Journal of Medicine and Philosophy 31: 165-175.

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Hoping when there is no hope

November 27, 2017

Pär SegerdahlPatients participating in phase I oncology trials have terminal cancer and are near the end of life. Participating in research cannot cure them or even extend their lives. Not only because they have terminal cancer, but also because in phase I trials one tests the safety profile of the treatment, not effectiveness against cancer.

Nevertheless, many patients state that hope is an important reason for them to participate in phase I oncology trials. This is worrying from an ethical perspective. Do they understand what they agree to when they enroll as research participants? Have they been properly informed?

In an article in the Journal of Oncology Practice, Tove Godskesen discusses the issue, together with Ulrik Kihlbom. They argue that it is a norm in cancer care to provide hope to patients, and that this norm may support a tendency in personnel who recruit research participants to not always discourage hope, but rather reinforce it.

Since supporting hope in cancer patients is humanly important, it is not entirely easy to find a solution to the problem. Godskesen and Kihlbom proceed cautiously by distinguishing three kinds of hope that cancer patients may have concerning their participation in phase I trials.

The first is independent hope: patients hope for something that is independent of cure, such as receiving more attention by participating in research. The second kind of hope is realistic hope: patients understand that there is really no hope of cure or prolonged life, but they still hope against hope. The third kind is unrealistic hope: patients misunderstand the situation and think they are offered a treatment that doctors/researchers believe can help.

It is reasonable to support independent and realistic hope in phase I trials, according to Godskesen and Kihlbom. However, unrealistic hope is ethically worrying. It should be discouraged when patients enroll as research participants.

Discouraging unrealistic hope requires awareness of the norm to provide hope to cancer patients. The authors describe how a hopeful attitude is activated simultaneously with the cancer diagnosis. Words like treatment, hope and cure are immediately emphasized in the conversations with patients. The risk is that these words are used in the same hopeful spirit also when participation in a phase I trial is discussed.

Another problem in this context is that patients participating in phase I trials rarely receive palliative care, which would be reasonable given their terminal cancer. This may create the false appearance that research participation means being offered a new treatment. Perhaps the norm to provide hope creates this reluctance to mention palliative care. Staff is afraid that they may discourage hope. That fear is problematic, the authors claim.

What measures do Godskesen and Kihlbom propose? First of all, we need to put extra high demands on the information to participants in phase I oncology trials so that this vulnerable patient group is not exploited. Secondly, the information should contain palliative options. Thirdly, patients should receive palliative counseling throughout the trial.

Integrating research participation with palliative care reduces the risk of encouraging unrealistic hope in this patient group. The fact that trial participation is research and not treatment becomes clearer.

Pär Segerdahl

Godskesen T. and Kihlbom, U. (2017), “I have a lot of pills in my bag, you know”: institutional norms in the provision of hope in phase I clinical cancer trials. Journal of Oncology Practice 13(10): 679-682. DOI: 10.1200/JOP.2017.021832

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Stop talking about predatory journals?

November 22, 2017

Pär SegerdahlAlmost no researcher escapes the incessant emails from journals that offer to publish one’s research. A desire for gain, however, lies behind it all. Although it is not mentioned in the emails, the author typically is charged, and peer review is more or less a façade. Just submit your text and pay – they publish!

The unpleasant phenomenon is standardly referred to as predatory publishing. Worried researchers, publishers, and librarians who want to warn their users, they all talk about predatory journals. These journals pretend to be scientific, but they hardly are.

Lately, however, some researchers have begun to question the vocabulary of predation. Partly because there are scholars who themselves use these journals to promote their careers, and who therefore do not fall prey to them. Partly because even established journals sometimes use the methods of predatory journals, such as incessant spamming and high publishing fees. This is problematic, but does it make these journals predatory?

Another problem pointed out is the risk that we overreact and suspect also promising trends in academic publishing, such as publishing open access. Here too, authors often pay a fee, but the purpose is commendable: making scientific publications openly available on the internet, without payment barriers.

So, how should we talk, if we want to avoid talking about predatory journals?

Stefan Eriksson and Gert Helgesson annually update a blacklist of predatory journals in medical ethics, bioethics and research ethics. They have also published articles on the phenomenon. In a recent opinion piece in Learned Publishing, however, they propose talking instead about two types of problematic journals: deceptive and low-quality journals.

Deceptive journals actively mislead authors, readers and institutions by providing false information about peer review, editorial board, impact factor, publishing costs, and more. Deceptive journals should be counteracted through legal action.

Low-quality journals are not guilty of possibly illegal actions. They are just bad, considered as scientific journals. In addition to poor scientific quality, they can be recognized in several ways. For example, they may publish articles in a ridiculously broad field (e.g., medicine and non-medicine). They may send inquiries to researchers in the “wrong” field. They may lack strategies to deal with research misconduct. And so on.

Stefan Eriksson and Gert Helgesson emphasize that the distinction between deceptive and low-quality journals can help us more clearly see what we are dealing with. And act accordingly. Some journals are associated with actions that can be illegal. Other journals are rather characterized by poor quality.

Time to drop the colorful vocabulary of predation?

Pär Segerdahl

Eriksson, S. and Helgesson, G. (2017), Time to stop talking about ‘predatory journals’. Learned Publishing. doi:10.1002/leap.1135

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