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

Tag: end of life care

Patient integrity at the end of life

When we talk about patient integrity, we often talk about the patients’ medical records and the handling of their personal data. But patient integrity is not just about how information about patients is handled, but also about how the patients themselves are treated. For example, can they tell about their problems without everyone in the waiting room hearing them?

This more real aspect of patient integrity is perhaps extra challenging in an intensive care unit. Here, patients can be more or less sedated and connected to life-sustaining equipment. The patients are extremely vulnerable, in some cases dying. It can be difficult to see the human being for all the medical devices. Protecting the integrity of these patients is a challenge, not least for the nurses, who have close contact with them around the clock (and with the relatives). How do nurses perceive and manage the integrity of patients who end their lives in an intensive care unit?

This important question is examined in an article in the journal Annals of Intensive Care, written by Lena Palmryd, Åsa Rejnö and Tove Godskesen. They conducted an interview study with nurses in four intensive care units in Sweden. Many of the nurses had difficulty defining integrity and explaining what the concept means in the care of dying patients. This is not surprising. Not even the philosopher Socrates would have succeeded in defining integrity. However, the nurses used other words that emphasised respect for the patient and patient-centred attitudes, such as being listening and sensitive to the patient. They also tried to describe good care.

When I read the article, I was struck by how ethically central concepts, such as integrity and autonomy, often obscure reality and paralyse us. Just when we need to see clearly and act wisely. When the authors of the article analyse the interviews with the nurses, they use five categories instead, which in my opinion speak more clearly than the overall concept of integrity does:

  1. Seeing the unique individual
  2. Being sensitive to the patient’s vulnerability
  3. Observing the patient’s physical and mental sphere
  4. Taking into account the patient’s religion and culture
  5. Being respectful during patient encounters

How transparent to reality these words are! They let us see what it is about. Of course, it is not wrong to talk about integrity and it is no coincidence that these categories emerged in the analysis of the conversations with the nurses about integrity. However, sometimes it is perhaps better to refrain from ethically central concepts, because such concepts often hide more than they reveal.

The presentation of the interviews under these five headings, with well-chosen quotes from the conversations, is even more clarifying. This shows the value of qualitative research. In interview studies, reality is revealed through people’s own words. Strangely enough, such words can help us to see reality more clearly than the technical concepts that the specialists in the field consider to be the core of the matter. Under heading (2), for example, a nurse tells of a patient who suffered from hallucinations, and who became anxious when people showed up that the patient did not recognize. One evening, the doctors came in with 15 people from the staff, to provide staff with a report at the patient’s bedside: “So I also drove them all out; it’s forbidden, 15 people can’t stand there, for the sake of the patient.” These words are as clarifying as the action itself is.

I do not think that the nurse who drove out the crowd for the sake of the patient thought that she was doing it “to protect the patient’s integrity.” Ethically weighty concepts can divert our attention, as if they were of greater importance than the actual human being. Talking about patient integrity can, oddly enough, make us blind to the patient.

Perhaps that is why many of Socrates’ conversations about concepts end in silence instead of in definitions. Should we define silence as an ethical concept? Should we arrange training where we have the opportunity to talk more about silence? The instinct to control reality by making concepts of it diverts attention from reality.

Read the qualitative study of patients’ integrity at the end of life, which draws attention to what it really is about.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Palmryd, L., Rejnö, Å. & Godskesen, T.E. Integrity at end of life in the intensive care unit: a qualitative study of nurses’ views. Ann. Intensive Care 11, 23 (2021). https://doi.org/10.1186/s13613-021-00802-y

This post in Swedish

We like real-life ethics

Nurses’ experiences of do not resuscitate orders

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogWhen a critically ill patient has such a poor prognosis that resuscitation would be of no use, doctors can write a so-called do not resuscitate order. The decision means that if the heart stops beating, the medical team should not, as otherwise, perform coronary pulmonary rescue.

The decision is made by the physician on the basis of a medical assessment. But the decision affects the patient, the relatives, and the nurses who care for the patient and family.

Mona Pettersson at CRB is writing her thesis on the decision not to resuscitate. In a study recently published in Nursing Ethics, she interviewed 15 nurses about their experiences of do not resuscitate orders at Swedish hematology and oncology departments.

The nurses describe problems that may arise. The nurses have daily close contact with patients and notice when they are no longer responding to treatment. The nurses can then expect a do not resuscitate order, which may not always come. The decision may be taken by the doctor on the spot, when a resuscitation attempt already started. Sometimes decisions are unclear or contradictory: decisions are taken while continuing to give the patient full treatment. And if the patient and family are not informed about the decision, or the nurse is not present when the information is given, it becomes difficult for the nurse to care for the patient and family – for example, to answer questions afterwards.

Mona Pettersson concludes that nurses need clear, well-documented orders. Patients and families need to be informed and involved in the decisions, and nurses should be present when the information is provided. Finally, regular ethical discussions between nurses and doctors are needed, to understand each other and the different perspectives on do not resuscitate orders. Here you find a link to the article:

Co-authors are Mariann Hedström and Anna Höglund.

Before I finish this post, I want to mention a recently made compilation of our research on nursing ethics:

There you will find our publications with abstracts and links to the publications that are available online.

Pär Segerdahl

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