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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We want to be just - the Ethics Blog


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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Ethics and law of stem cell treatment of diabetes

December 21, 2016

Pär SegerdahlMany people support in various ways medical research, which they perceive as urgent in view of the needs of various patient groups. But patients typically won’t benefit from research unless the results are translated into development of medical products.

Type 1 diabetes is an incurable disease that requires daily life-sustaining treatment and strict dietary rules. Disease onset usually occurs at an early age.

In Sweden, about 50 000 people have this form of diabetes and of these around 8 000 are children. In type 1 diabetes, the immune system attacks the insulin-producing cells. Without insulin the body cells cannot use glucose for energy, and the sugar level in the blood rises. Energy is recovered instead from fat and protein, which causes waste products that can cause diabetic coma and attacks on vital organs.

Today, diabetes is treated with daily insulin injections, or by using an insulin pump. This requires continuous measurement of blood sugar levels, as incorrect doses of insulin entails risks and can be life-threatening. It is not easy to live with diabetes.

An alternative treatment, which is still at the research stage, is to generate new insulin-producing cells using human embryonic stem cells. The insulin-producing cells detect blood sugar levels and regulate the secretion of insulin. In order not to be attacked by the immune system, the transplanted cells are encapsulated in a protective material. It may become easier to live with diabetes.

But research alone doesn’t treat diabetes. Encapsulated insulin-producing cells need to be produced and made available also to patients; not only to research participants. But this is a big step and a host of ethical and legal issues, including embryo donation, patentability and consent, need to be examined and discussed.

The Swedish Research Council recently granted funding for a project to examine these issues. The project is led by Mats G. Hansson at CRB and is a collaboration with Olle Korsgren, professor of transplantation immunology, as well as with lawyers Anna-Sara Lind and Bengt Domeij, and philosophers and ethicists Jessica Nihlén Fahlquist and Pär Segerdahl.

The step from stem cell research to available treatments requires reflection. I look forward to start thinking about the ethical and philosophical questions.

Pär Segerdahl

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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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We think about bioethics : www.ethicsblog.crb.uu.se


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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We have a clinical perspective : www.ethicsblog.crb.uu.se


Genetic screening before pregnancy?

June 20, 2016

Pär SegerdahlGenetic diseases can arise in strange ways. So-called recessive diseases require that both parents have the gene for the disease. The parents can be healthy and unaware that they are carriers of the same non-dominant disease gene. In these cases, the risk that the child develops the disease is 25 percent.

In families with a history of some recessive disease, as well as in communities where some serious recessive disease is common, genetic screening before pregnancy is already used – to determine whether couples that are planning a child are, so to speak, genetically compatible.

As these genetic tests have become more reliable and affordable, one has begun to consider offering preconception genetic screening to whole populations. Since one doesn’t know then exactly which genes to look for, it’s not just about screening more people, but also about testing for more recessive traits. This approach has been termed expanded carrier screening (ECS).

In the Netherlands, a pilot project is underway, but the ethical questions are many. One concerns medicalization, the risk that people begin to think of themselves as being more or less genetically compatible with each other, and feel a demand to test themselves before they form a couple and plan children.

Sweden has not yet considered offering expanded carrier screening to the population and the ethical issues have not been discussed. Amal Matar, PhD student at CRB, decided to start investigating the issues in advance. So that we are prepared and can reason well, if preconception expanded carrier screening is suggested.

The first study in the PhD project was recently published in the Journal of Community Genetics. Interviews were made with clinicians and geneticists, as well as with a midwife and a genetic counselor, to examine how this type of genetic screening can be perceived from a Swedish health care perspective.

Ethical issues raised during the interviews included medicalization, effects on human reproductive freedom, parental responsibility, discrimination against diseased and carriers, prioritization of resources in health care, as well as uncertainties about what to test for and how to interpret results.

The study serves as an empirical exploration of the ethical issues. Some of these issues will be examined philosophically further on in Amal Matar’s project.

(Read more about Amal Matar and her work at CRB here.)

Pär Segerdahl

Matar, A., Kihlbom, U., Höglund, A.T. Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS) – a qualitative study. Journal of Community Genetics, DOI 10.1007/s12687-016-0268-2

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We like challenging questions - the ethics blog


Oppositional words simplify thought: A or B?

May 3, 2016

Pär SegerdahlParties can stand in opposition to each other. But so can words. The word good stands in opposition to the word bad; the word right to the word wrong. And in everyday talk, the word human stands in opposition to the word animal.

Oppositional words are efficient in conversation. If I tell you that I saw an animal, you immediately know that it wasn’t a human I saw. Oppositional words are splendid communicational instruments. They enable quick inferences, like the one about what I saw and didn’t see.

However, oppositional words are not always good to think with. This sounds odd, because we associate thinking with inferences. If oppositional words support inferences, shouldn’t they be absolutely essential to thinking?

The problem is that oppositions support quick inferences, when we need slow ones. They assume a given order, when we need to explore a neglected order.

This we felt intensely at the seminar last Monday, when we discussed empirical ethics. More and more bioethicists do empirical studies (questionnaires, interviews, etc.) of how people look at medical research and care. Based on the empirical studies they then develop normative conclusions, for example, about how ethical guidelines should be formulated.

Empirical ethics thereby seems to sin against a fundamental opposition: that between is and ought. If it is a fact that people from time immemorial cut off the hands of thieves (and thought one should do so), it still does not follow from this fact that one ought to cut off the hands of thieves.

One might say: the is/ought-opposition supports quick inferences about what kind of inferences one cannot make: from an is an ought cannot be extrapolated.

Empirical ethics immediately appears like a ridiculous error. Nothing normative can be derived from mere facts disclosed by surveys and interviews. If such inferences nonetheless are made, they are illegitimate. Empirical studies drain bioethics of normativity, by scooping out of the wrong well.

But is this an accurate description of empirical ethics? Is it just a mistake; like trying to scoop water out of a dry well?

It is easy to accuse empirical ethics in terms of the is/ought-opposition. This makes it seductively easy to think that the only way of defending empirical ethics is by either showing that it honors the is/ought-opposition or rejecting the opposition as false.

– As if oppositions had to be either true or false: another opposition!

You notice here how oppositional words, which work well in conversation, push our thoughts now in this direction, now in that. Instruments that support us when we talk can give us paralyzing shocks when we think. (Don’t try to talk your way out of philosophical problems!)

The discussion about empirical ethics is likely to continue at the seminar. I’m looking forward to it.

Pär Segerdahl

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We like real-life ethics : www.ethicsblog.crb.uu.se


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