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

Tag: palliative care

Dignity in a nursing home when the body fails

The proportion of elderly people in the population is increasing and the tendency is to provide care for the elderly at home as long as possible. Nursing homes are therefore usually inhabited by the very weakest, with several concurrent illnesses and often in need of palliative care.

Living a dignified life in old age naturally becomes more difficult when the body and mind fail and you become increasingly dependent on others. As a nursing home resident, it can be close at hand to feel unworthy and a nuisance. And as staff, in stressful situations it can happen that you sometimes thoughtlessly treat the elderly in an undignified manner.

Preserving the dignity of the elderly is an important responsibility of nursing homes. But what does reality look like for the residents? How does the care provider take responsibility for dignified care? And is it reasonable to regard the residents as passive recipients of dignified care? Isn’t such a view in itself undignified?

These questions suggest that we need to look more closely at the reality of the elderly in a nursing home. Bodil Holmberg has done this together with Tove Godskesen, in a study published in the journal BMC Geriatrics. Participatory observations and interviews with residents and staff at a nursing home in Sweden provided rich material to analyse and reflect on.

As expected, it was found that the major threat to the residents’ dignity was precisely how the body fails at a faster rate. This created fear of becoming increasingly dependent on others as well as feelings of anguish, loneliness and meaninglessness. However, it was also found that the elderly themselves had a repertoire of ways to deal with their situation. Their self-knowledge enabled them to distinguish between what they could still do and what they had to accept. In addition, aging itself gave rise to new challenges to engage with. One of the residents proudly told how they had developed a way to pick up the grabbing tong when it had been dropped, by sliding deeper into the wheelchair to reach the floor. Teaching new staff how to carry out intricate medical procedures also gave rise to pride.

As aging challenges a dignified life, older people thus develop self-knowledge and a whole repertoire of ways to maintain a dignified life. This is an essential observation that the authors make. It shows the importance of not considering nursing home residents as passive recipients of dignified care. If I understand the authors correctly, they suggest that we could instead think in terms of assisting older people when their bodies fail: assisting them in their own attempts to lead dignified lives.

Participatory observations and interviews can help us see reality more clearly. The method can clarify both the expected and the unexpected. Read the pertinent article here: Dignity in bodily care at the end of life in a nursing home: an ethnographic study

The authors also found examples of undignified treatment of the residents. In another article, also from this year, they discuss barriers and facilitators of ethical encounters at the end of life in a nursing home. Reference to the latter article can be found below.

Pär Segerdahl

Written by…

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

Holmberg, B., Godskesen, T. Dignity in bodily care at the end of life in a nursing home: an ethnographic study. BMC Geriatr 22, 593 (2022). https://doi.org/10.1186/s12877-022-03244-8

Holmberg, B., Godskesen, T. Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study. BMC Palliat Care 21, 134 (2022). https://doi.org/10.1186/s12904-022-01024-0

This post in Swedish

Ethics needs empirical input

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