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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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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Beyond awareness: the need for a more comprehensive ethics of disorders of consciousness

October 23, 2017

Michele FariscoDisorders of consciousness like coma, unresponsive wakefulness syndrome, and what is known as minimally conscious state, are among the most challenging issues in current ethical debates. Ethical analyses of these states usually focus on the ‘residual’ awareness that these patients might still have. Such awareness is taken to have bearing on other factors that are usually considered ethically central, like the patients’ well-being.

Yet, when we take a look at recent scientific investigations of mental activity it appears that things are much more complicated than usually thought. Cognitive science provides empirical evidence that the unconscious brain is able to perform almost all the activities that we (wrongly) think are exclusive of consciousness, including enjoying positive emotions and disregarding negative ones. To illustrate, people that are subliminally exposed to drawings of happy or sad faces are emotionally conditioned in their evaluation of unknown objects, like Chinese characters for people who don’t know Chinese. If preceded by subliminal happy faces, these characters are more likely to elicit positive feelings when consciously perceived. This means that unconscious emotions exist, and these emotions are (plausibly) positive or negative. This in turn suggests that consciousness is not required to have emotions.

Accordingly, people with disorders of consciousness could also have unconscious emotions. Even though they are not capable of external behavior from which we could infer the presence of positive or negative emotional life, we cannot rule out the possibility that these patients’ residual brain activity is related to a residual unaware emotional life, which can be either positive or negative.

We should try to avoid becoming biased by the sort of “consciousness-centrism” that impedes us from seeing the total landscape: there is a lot going on behind (and beyond) the eyes of our awareness.

What does this imply for the ethics of caring for and interacting with people affected by severe disorders of consciousness? Well, as previously said, the ethical discourse surrounding the care for and the relationship with these people has usually focused on their residual awareness, scrutinizing whether and to what extent these people could consciously experience good and bad feelings. Yet if it is possible to have these experiences at the unaware level, shouldn’t this be a relevant consideration when engaging in an ethical analysis of patients with disorders of consciousness? In other words, shouldn’t we take care of their residual unconsciousness in addition to their residual consciousness?

I believe we need to enlarge the scope of our ethical analyses of patients with disorders of consciousness, or at least acknowledge that focusing on residual consciousness is not all we should do, even if it is all we presently can do.

Michele Farisco

Winkielman P., Berridge K.C. Unconscious emotion. Current Directions in Psychological Science. 2004;13(3):120-3

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Communicating risk in human terms

October 4, 2017

Pär SegerdahlThe concept of risk used in genetics is a technical term. For the specialist, risk is the probability of an undesired event, for example, that an individual develops some form of cancer. Risk is usually stated as a percentage.

It is well known that patients have difficulties to access the probability notion of risk. What do their difficulties mean?

Technical notions, which experts use in their specialist fields, usually have high status. The attitude is: this is what risk really is. Based on such an attitude, people’s difficulties mean: they have difficulties to understand risk. Therefore, we have to help them understand, by using educational tools that explain to them what we mean (we who know what risk is).

We could speak of communicating risk in the experts’ terms (and on their terms). Of course, one tries to communicate risk as simply and accessibly as possible. However, the notion of ​​what to communicate is fixed. Anything else would disturb the attitude that the expert knows what risk really is.

In an article in Patient Education and Counseling, Jennifer Viberg Johansson (along with Pär Segerdahl, Ulrika Hösterey Ugander, Mats G. Hansson and Sophie Langenskiöld) makes an inquiry that departs from this pattern. She explores how people themselves make sense of genetic risk.

How does Viberg’s study depart from the pattern? She does not use the technical notion of risk as the norm for understanding risk.

Viberg interviewed healthy participants in a large research project. She found that they avoided the technical, probability notion of genetic risk. Instead, they used a binary concept of risk. Genetic risk (e.g., for breast cancer) is something that you have or do not have.

Furthermore, they interpreted risk in three ways in terms of time. Past: The risk has been in my genome for a long time. When symptoms arise, the genetic risk is the cause of the disease. Present: The risk is in my genome now, making me a person who is at risk. Future: The risk will be in my genome my entire life, but maybe I can control it through preventive measures.

These temporal dimensions are not surprising. People try to understand risk in the midst of their lives, which evolve in time.

It is not the case, then, that people “fail” to understand. They do understand, but in their own terms. They think of genetic risk as something that one has or does not have. They understand genetic risk in terms of how life evolves in time. A practical conclusion that Viberg draws is that we should try to adapt genetic risk communication to these “lay” conceptions of risk, which probably help people make difficult decisions.

We could speak of communicating risk in human terms (and on human terms). What does genetic risk mean in terms of someone’s past, present and future life?

When you talk with people with lives to live, that is probably what the risk really is.

Pär Segerdahl

J. Viberg Johansson, et al., Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.09.009

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Nudging people in the right direction

June 27, 2017

Pär SegerdahlBehavioral scientist study how environments can be designed so that people are pushed towards better decisions. By placing the vegetables first at the buffet, people may choose more vegetables than they would otherwise do. They choose themselves, but the environment is designed to support the “right” choice.

Nudging people to behave more rationally may, of course, seem self-contradictory, perhaps even unethical. Shouldn’t a rational person be allowed to make completely autonomous decisions, instead of being pushed in the “right” direction by the placement of salad bowls? Influencing people by designing their environments might support better habits, but it insults Rationality!

As a philosopher, I do, of course, appreciate independent thinking. However, I do not demand that every daily decision should be the outcome of reasoning. On the contrary, the majority of decisions should not require too much arguing with oneself. It saves time and energy for matters that deserve contemplation. A nudge from a salad bowl at the right place supports my independent thinking.

Linnea Wickström Östervall, former researcher at CRB, has tried to nudge people to a more restrained use of antibiotics. It is important to reduce antibiotics use, because overuse causes antibiotic resistance: a major challenge to manage.

In her study, she embedded a brief reminder of antibiotic resistance in the questionnaire that patients answer before visiting the doctor. This reminder reached not only the patients, then, but also the doctors who went through the questionnaire with the patients. The effect was clear at the clinic level. In the clinics where the reminder was included in the questionnaire, antibiotics use decreased by 12.6 percent compared to the clinics used as control.

If you want to know more about the study, read Linnea’s article in the Journal of Economic Behavior & Organization, where the interesting results are presented in detail. For example, the nudge appears to affect the interaction between doctors and patients, rather than the individual patients.

Can you arrange your everyday environment so that you live wisely without making rational choices?

Pär Segerdahl

Wickström Östervall, L. 2017. “Nudging to prudence? The effect of reminders on antibiotics prescriptions.” Journal of Economic Behavior & Organization 135: 39-52.

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Approaching future issues - the Ethics Blog


Did medicine save the life of ethics?

October 18, 2016

Pär SegerdahlAbout thirty-five years ago, Stephen Toulmin wrote an article on the topic: How medicine saved the life of ethics. I think it is still worth reading.

Toulmin argued roughly as follows:

During the first six decades of the 1900s, ethics wasn’t feeling well at all. One might say that it suffered from moral aphasia: it couldn’t talk sensibly about real ethical problems.

While moral philosophers were preoccupied with formally specifying what distinguishes moral questions and judgements in general, without taking sides on specific ethical issues, ethics debaters outside of academic philosophy were trapped in the opposition between dogmatism and relativism.

Dogmatists referred respectfully to universal principles and authoritative religious systems, while relativists and subjectivists dismissed the absolute claims with reference to anthropological and psychological findings about differences in people’s attitudes.

In short, while philosophers analyzed what characterizes morality in general and left living ethical issues to their fate, dogmatists and relativists fought fruitlessly about whether these issues have absolute answers, based on universal principles, or if the answers are relative to cultural and individual factors.

In this near-death state, medicine came to the rescue. Medical practices gave rise to very definite ethical questions that insisted on answers and guidance. When philosophers in the 1960s began to pay attention to these issues, ethics was rescued from the life-threatening condition in which it found itself.

Toulmin suggests that medical ethics saved the life of ethics through four resuscitation efforts:

By focusing on situations, needs and interests, which are more objectively given than the attitudes, feelings and desires that anthropology and psychology were interested in. Whether a person’s actions threaten another’s health can be discussed in objective terms, as opposed to questions about habits and tastes.

(Here I think of the emergence of empirical ethics, where more objective aspects of ethical problems are explored in various kinds of studies.)

By analyzing concrete cases, instead of striving towards the universal principles to which dogmatists referred. Toulmin compares medical ethics to medical practice. Diseases described only in general terms become abstract and without specific relevance: they acquire practical relevance only for health professionals who learned the art of identifying real-life cases of the diseases. The same applies to ethics, which requires an art of identifying real-life cases of, for example, “disrespect”; otherwise ethical concepts become abstract and without practical significance.

(Here I think, among other things, of the emergence of ethics rounds in the ethics training of healthcare staff.)

By focusing on professional activities, giving rise to definite responsibilities and duties. To understand our duties to each other, we cannot assume an abstract image of humans as individuals. We live in communities and act in forms of life that shape our obligations. Issues in medical ethics are often about obligations shaped by professional roles and contexts.

(Here I think of the previous blog post, about boundaries between public health and healthcare, which sometimes might be transgressed. Practices such as research, healthcare and industry shape different types of obligation and responsibility, which it sometimes can be difficult to keep separate or balance.)

By reintroducing assessments of equity and personal relationships in ethics, assessments of how the circumstances alter the cases. What, in a doctor-patient relationship, is a routine examination, can outside of this context give us reason to speak of an assault. Circumstances alter the cases, and Toulmin compares medical ethics with how courts make assessments of what is just and reasonable between people, given what we know about them.

(Here I think of how medical ethics increasingly is done in dialogue with patients, health professionals and researchers, to better understand the circumstances.)

– Why do I find Toulmin’s article worth reading today?

Among other things, because it provides a broad and realistic description of ethics as a practice and art, in time and in particular contexts, partly comparable to the doctor’s or the lawyer’s practice and art. The article also makes the development of bioethics understandable, such as the emergence of empirical ethics, of ethics rounds, and of the endeavor to work in dialogue with stakeholders and with the professions.

The article also nuances a simplified understanding of how ethical questions are answered. We are inclined to think that empirical studies give us the facts. Then we add general moral principles and derive the ethical conclusions. This could resemble a relapse into dogmatism, where religious principles have been replaced by secular philosophical principles.

Finally, I want to mention that the article sheds light on a problem that we encountered in some empirical studies lately. Colleagues have made ethical education interventions in different healthcare professions. The participants appreciated the practical exercises and found them instructive. But no clear effect of the exercises could be measured by comparing results of knowledge tests before and after the interventions.

Toulmin’s description of how medicine saved the life of ethics may suggest an explanation. The exercises were practical and concerned cases with which the participants were familiar. But the knowledge tests were formulated roughly in those general terms which constituted such a large part of the illness of ethics. The interventions might have been vitalizing, but not the method of measurement.

Pär Segerdahl

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Physicians’ experiences of do-not-resuscitate orders

September 21, 2016

Pär SegerdahlCritically ill patients sometimes have such a poor prognosis that cardiopulmonary resuscitation for cardiac arrest (CPR) would not help. They are so weak that they would not survive the treatment. If they survive, they do so with even poorer quality of life. The physician can then write a so-called DNR decision, which means that CPR should not be performed.

Mona Pettersson, PhD student at CRB, writes her thesis on these decisions. I have previously written about her first study, in which she interviewed nurses about their experiences of DNR decisions at Swedish hematology and oncology departments.

This summer the Journal of Palliative Care and Medicine published the second study, in which physicians were interviewed about their experiences of these decisions.

In the interview material, Mona Pettersson discerns three roles that physicians perceive they have. They act as decision maker, as patient advocate and mediator for relatives, and as team member. Physicians describe their experiences of these roles, such as the importance of making clear to relatives that it is the physician who makes the decision – so that relatives don’t risk feeling guilty.

The interviews with physicians also contain descriptions of ethical difficulties associated with DNR decisions. Although the physicians emphasize that the decision is made on medical grounds, they also describe ethical challenges and trade-offs. The decisions seem to be especially difficult in hematology wards, where patients can get intensive treatment for a long time, and where even the treatment makes them ill, but almost up to the last moment can be regarded as treatable. Here decisions are made quickly and at a late stage. Physicians’ experiences of the decision not to resuscitate vary from experiencing that they make themselves God, to experiencing it as just one medical decision among others.

In her conclusion, Mona Pettersson emphasizes that the results indicate how DNR decisions are made not only on medical grounds (such as prognosis and prospect of surviving cardiopulmonary resuscitation). They are made also with reference also to ethical values such as autonomy and quality of life after resuscitation.

In her future research, Mona Petterson will examine the ethical skills needed in DNR decisions and how they can be learned and developed.

Pär Segerdahl

Pettersson, M. Hedström, M. and Höglund, A. Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study. Journal of Palliative Care and Medicine. 2016. DOI: 10.4172 / 2165-7386.1000275

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