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

Tag: intensive care

Losing a family member in an intensive care unit

roses
14 April, 2026 / / 1 Comment

An intensive care unit is a place where life is maintained with the help of advanced medical equipment. But it is also a place where life sometimes ends. In cases where it becomes clear that life-sustaining care is no longer meaningful, but should be changed into end-of-life care, the healthcare staff has a particularly great responsibility to support the patient’s family and make the situation understandable to them.

The physical environment of an intensive care unit can feel cold and alien. The emotional contact with the intensive care nurses therefore becomes all the more important for the family members’ experiences and ability to cope with the situation – both in the unit and afterwards. In a recently published study, 22 family members were interviewed about their experiences of losing a loved one in an intensive care unit in Sweden.

The interviews revealed that family members needed more than just information. Arrival at the unit was characterized by fear, uncertainty and confusion. What they found particularly important was that the healthcare staff understood their emotional state and showed their understanding through compassionate ways of meeting and talking to them. The fact that the staff put chairs around the bed and explained the visit to the patient created a sense of shared humanity.

Although several of the interviewees appreciated that the staff tried to inform them about the patient’s condition, they had difficulty understanding the meaning of what was said. The medical information did not meet their emotional needs. Sometimes the information could not be absorbed at all, or they got fixated on some medical detail in the information. The most difficult thing to understand was, of course, that the relative was now very close to death and might not even survive the night. While some had difficulty giving up hope, others could perceive any attempts to give hope as clearly empty. What the family members mainly emphasized as important was how the nurses’ compassion and emotional support helped them understand the reality of the loss. Understanding life and death cannot be equated with being informed.

One thing that particularly worried family members was whether the loved one suffered in their final moments of life. Even though they knew that the nurses had given pain relief and sedatives, they were concerned (both before and after the patient’s death) whether the doses had been high enough to completely relieve pain, fear and anxiety. Some had also (perhaps much earlier) promised their loved ones to ensure that their death would be peaceful, which could reinforce fear and give rise to feelings of guilt. Others, who felt that the staff had done everything that could be done for the patient, could still worry about invisible forms of anxiety that the sedatives did not fully relieve. Or worry that the medication itself could cause nightmares. Addressing family members’ concerns about their loved one’s suffering requires more than just information: emotionally clear communication rooted in understanding their concerns.

Finally, the interviews highlighted the importance of being able to say goodbye to the loved one, whether it took place before, after, or at the moment of death. Again, the healthcare staff played an important role in enabling a farewell that the relatives felt was in line with their relationship. Regardless of whether the farewell is improvised or ritual, a meaningful farewell can have long-term significance for the grieving process.

Read the article here: Losing a close person to death in ICU: A thematic analysis of bereaved family members’ experiences of end-of-life care.

The authors emphasize four things to consider in particular to further improve a family-centered approach in an intensive care unit. First, family members need to feel seen and heard in a situation of emotional chaos. Second, they need to understand the implications of withdrawing treatment. Third, they need to trust that their loved one is not suffering, or did not need to suffer. Finally, family members need the opportunity for a meaningful farewell.

All of this requires that intensive care nurses can prioritize support for family members.

Pär Segerdahl

Written by…

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

Lena Palmryd, Anette Alvariza, Åsa Rejnö, Tove Godskesen, Losing a close person to death in ICU: A thematic analysis of bereaved family members’ experiences of end-of-life care, Intensive and Critical Care Nursing, Vol. 94, 2026, https://doi.org/10.1016/j.iccn.2026.104359

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End-of-life care: ethical challenges experienced by critical care nurses

Hospital machine
11 June, 2024 / / 1 Comment

In an intensive care unit, seriously ill patients who need medical and technical support for central bodily functions, such as breathing and circulation, are monitored and treated. Usually it goes well, but not all patients survive, despite the advanced and specialized care. An intensive care unit can be a stressful environment for the patient, not least because of the technical equipment to which the patient is connected. When transitioning to end-of-life care, one therefore tries to create a calmer and more dignified environment for the patient, among other things by reducing the use of life-sustaining equipment and focusing on reducing pain and anxiety.

The transition to end-of-life care can create several ethically challenging situations for critical care nurses. What do these challenges look like in practice? The question is investigated in an interview study with nurses at intensive care units in a Swedish region. What did the interviewees say about the transition to end-of-life care?

A challenge that many interviewees mentioned was when life-sustaining treatment was continued at the initiative of the physician, despite the fact that the nurses saw no signs of improvement in the patient and judged that the probability of survival was very low. There was concern that the patient’s suffering was thus prolonged and that the patient was deprived of the right to a peaceful and dignified death. There was also concern that continued life-sustaining treatment could give relatives false hope that the patient would survive, and that this prevented the family from supporting the patient at the end of life. Other challenges had to do with the dosage of pain and anti-anxiety drugs. The nurses naturally sought a good effect, but at the same time were afraid that too high doses could harm the patient and risk hastening death. The critical care nurses also pointed out that family members could request higher doses for the patient, which increased the concern about the risk of possibly shortening the patient’s life.

Other challenges had to do with situations where the patient’s preferences are unknown, perhaps because the patient is unconscious. Another challenge that was mentioned is when conscious patients have preferences that conflict with the nurses’ professional judgments and values. A patient may request that life-sustaining treatment cease, while the assessment is that the patient’s life can be significantly extended by continued treatment. Additional challenging situations can arise when the family wants to protect the patient from information that death is imminent, which violates the patient’s right to information about diagnosis and prognosis.

Finally, various situations surrounding organ donation were mentioned as ethically challenging. For example, family members may oppose the patient’s decision to donate organs. It may also happen that the family does not understand that the patient suffered a total cerebral infarction, and believes that the patient died during the donation surgery.

The results provide a good insight into ethical challenges in end-of-life care that critical care nurses experience. Read the article here: Critical care nurses’ experiences of ethical challenges in end-of-life care.

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, Alvariza A, Godskesen T. Critical care nurses’ experiences of ethical challenges in end-of-life care. Nursing Ethics. 2024;0(0). doi:10.1177/09697330241252975

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Ethics needs empirical input

Patient integrity at the end of life

dandelion seeds blowing away
23 March, 2021 / / 1 Comment

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

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