A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: patient-doctor relationship (Page 2 of 3)

Hoping when there is no hope

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

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

We challenge habits of thought : the Ethics Blog

Communicating risk in human terms

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

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?

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

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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Macchiarini and the spirit of fraudulence

Pär SegerdahlI assume you heard of Paolo Macchiarini, the “star surgeon” who, with the willpower of a general, simply would win a great battle at the frontline of research – by creating new tracheae using the patients’ own stem cells. That the endeavor had costs in terms of a few soldiers’ or patients’ lives is sad, but some losses must be accepted if one is to win a major battle in the service of cutting-edge experimental research.

It is difficult to avoid such an interpretation of Macchiarini’s mindset, after seeing the Swedish TV-documentaries about him (“Experimenten”/”The Experiments”). You feel the presence of a dominating iron will to carry out a plan and to win. It feeds a warlike spirit in which collegial doubts must be suppressed because they corrupt the morale and slow down the march forward, toward the frontline.

Truth is, as we know, the first casualty of war. Losses must be described as successes, in order not to lose readiness for action in the final battle – which, of course, will be won, don’t for a moment doubt that! The condition of patients who after surgery barely can breathe must thus be described as if the surgery had given them a nearly normal respiratory function. Macchiarini’s misconduct follows the logic of war.

Imagine this rigid winner, waiting impatiently for patients for whom his unproven methods (with some good will) could be interpreted as a last chance to survive. Does he approach the patients as a doctor who wants to offer a last treatment option? Hardly, but the possibility of interpreting the situation in such a way takes him to the frontline: he gets the opportunity to operate on them.

Does he then relate to the patients as a researcher to his participants? Not that either. For the treatment is only improvised in the heat of battle and can hardly even be called experimental; and all failures will be covered up by more scientific fraudulence.

The fact that research ethics developed in the shadow of the Second World War is hardly a coincidence. Something that worries in the Macchiarini case is that research itself – with its competition for funding and more – obviously can be animated by a warlike and strategic spirit of winning, which corrupts individuals as well as institutions…

It goes without saying that suspected research misconduct should not be investigated by the universities themselves; that there is a need for an independent body that handles such matters.

Pär Segerdahl

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Following the news - the ethics blog

Ethical questions raised by experiencing another culture (By Amal Matar)

Amal MatarWhen I first moved to Sweden, I was pretty excited to explore a new country and experience Swedish culture and life. In many ways I had not expected the extent of the difference between what I was familiar with and Swedish culture. I assumed, naively, that I would be in a familiar setting because I had been to other countries. One of my preconceptions was seeing all Western countries as similar, another was believing that European countries shared the same values and culture. But I was proven wrong.

Being brought up in Cairo, Egypt, I was raised in a comparatively restrictive patriarchal family-oriented environment where gender roles are very specific. Although this is by no means uniform and there are exceptions to the rule as well as big variation among Egyptian urban and rural contexts, the overarching tendencies in terms of law and societal expectations are quite gender specific. For example, modesty is expected from women at all times in terms of dress and behavior, even when they are ill or seeking reproductive health advice.

Another dominant aspect is hierarchy. It exists not only in the academia and other working environments but also at family levels and even between spouses and between siblings. The older expect respect and obedience and should not be challenged even politely.

In contrast, Swedish culture is based on gender equality, where paternal leave is encouraged, and women’s representation is sometimes ensured by affirmative action. In addition, personal autonomy is embedded in the culture and laws are set to emphasize autonomy particularly in healthcare contexts. Hierarchy is not prominent and obedience is not expected. Respect and politeness are appropriate for all ages.

Navigating the healthcare system was a challenge I faced. It is quite structured and systematic, which in a way ensured efficiency, but this was novel to me. In addition, I had difficulty explaining my symptoms to my GP because of language barriers. She spoke neither English nor Arabic. Later, this was resolved because I was transferred to another GP who spoke English fluently.

This made me ponder on the challenges immigrants and refugees coming from the Middle East encounter upon arrival and the conflict they feel between their value system and the Swedish one. Might this be the reason why migrant women use less healthcare services compared to their counterpart? How culturally sensitive does Swedish healthcare need to be to accommodate the growing numbers of refugees? And would healthcare professionals, in order to be culturally sensitive, be expected to rethink and readdress their cultural norms? Is there a line to be drawn between being culturally sensitive and advocating beneficence? Are these two values (cultural sensitivity and beneficence) culturally relative? Which values should take the upper hand?

These are questions that my experience of moving to Sweden raised. I’m not sure how to answer them but I tend to think that there are possibly two scenarios that can ensue. Either the encounter of these two value systems can, over the long run, evolve into a third one. Or each party accepts their counterpart’s value system even when they don’t fully approve.

You can read more about my pondering in a more specific bioethical field, namely, reproductive ethics, by following this link.

Amal Matar

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

 

Culturally sensitive ethics

Pär SegerdahlHealth care receives patients from many different cultures and health care professionals are encouraged to be sensitive to patients’ cultural background. But what is a culture? What is it one should be sensitive to?

Last week, CRB organized a workshop on Islamic perspectives on reproductive ethics. A case that was discussed was this: an unmarried Muslim couple (21 years old) seeks advice on contraception. Should health care workers provide counseling, when premarital sex is forbidden in Islam?

The case brought the question of cultural sensitivity into immediate focus for me. To what should one be sensitive: to doctrines, or to human lives? What “is” a culture: the formulated ideas or the way people live (with their ideas)?

The Muslim couple actually sought counseling. Being culturally sensitive can also mean being sensitive to this fact: that this is how people can live (with their ideas).

It is tempting to objectify cultures in terms of doctrines, especially when they are foreign to us. We don’t know the people and their daily lives, so we try to understand them through the texts – as if we read their “source code.” But the texts are living parts of the culture. They have uses, and these practices cannot be inferred from the texts.

Aje Carlbom (social anthropologist at Malmö University) stressed that this temptation to objectify other cultures can arise even in a culture; for example, when people who belong to it move to parts of the world where people live differently. Suddenly they don’t fully understand their own culture, for it lacks its real-life support, its everyday context, and therefore one turns to the texts. One’s own culture is objectified.

I wonder: Are not these tendencies extremely common; are they not in all of us? Are they not in ethics? Isn’t there a will to objectify ethics, to formulate the “ethical source code” that should govern, for example, our biomedical practices?

I think we need culturally sensitive ethics: in the sense of an ethics that responds sensitively to what is actually happening, and that contributes to meaningful contexts. An ethics that does not objectify either cultures or Ethics (capitalized).

Pär Segerdahl

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Dissertation on palliative care of children with cancer

Pär SegerdahlApproximately every fifth child who gets cancer in Sweden dies from their disease. In her dissertation work at CRB, Li Jalmsell studied the care of these children at the end of their life from both the child’s and the parents’ and siblings’ perspectives.

One of her findings is that one doesn’t generally recognize that the child’s cancer is beyond cure until very close to death, giving little time to plan palliative care based on personal preferences.

Jalmsell also did surveys with parents and siblings who lost a child/sibling, and interviewed children with cancer. The children themselves emphasize in the interviews that they want honest information, even when it is bad. But they also want the conversations to be hopeful and contain a plan ahead; and they want to be informed simultaneously with the parents (not after the parents).

The psychological suffering of parents and siblings who lost a child/sibling seems to be influenced by different factors. Parents’ suffering after the child’s death is much dependent on how they experienced the child’s suffering near the end of life. The parents’ suffering also tended to increase if the child underwent bone marrow surgery before death, perhaps because of the hope of a cure that such an intense treatment awakens.

Siblings generally felt ill-informed and unprepared for the child’s death. Siblings who didn’t get opportunity to talk about what they could expect tended to feel anxiety long after the child’s death.

Jalmsell also stresses the importance of parents talking about death with their child. Other studies have shown that parents who don’t talk often regret this afterwards; while parents who talk with the child about death don’t regret it. In Jalmsell’s own study the parents say that the initiative to talk about death often came from the child, often through stories. The child understands its situation.

If you want to read Li Jalmsell’s dissertation, you can find it here:

It emphasizes the importance of open communication with the whole family.

The public examination is on Friday, September 25, at 09:00, at the Uppsala Biomedical Centre (BMC), room A1:111a. The examination will be conducted in English. Welcome to listen and ask questions!

Pär Segerdahl

 

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