Care in Palliative Care: A Challenging Concept with Normative Issues

Abstract

Palliative care is an approach for seriously ill patients. Illnesses and knowledge of limited life expectancy often limit self-determination among patients. Along with the concepts of patient autonomy and heteronomy, care is central to the everyday personal and institutional lives of the ill. However, the term ‘care’ has not yet been systematically examined. I argue for a clear distinction between care and paternalism in the discussion about the individual approach to a situation in everyday life, which are two different forms of action in which the patient’s will is considered to varying degrees. The (at least ethical) evaluation, and thus the individual situational need for justification of an action, is different for both forms of action, even if both forms can promote the autonomy of the patient. However, not ‘all’ patient requests are fulfilled through palliative care. There are (justified and perhaps necessary) limitations in the fulfilment of the patient’s goals on the part of those providing care. However, in the context of the discussion on care, these limitations also require a well-founded justification for each individual case.

Discussion

This article digs into what we really mean by “care” in palliative care and why that matters ethically. The author argues that care isn’t just “being helpful” or “being kind”. Rather, it is a specific kind of action where the intention lines up with the patient’s own wishes, values, and goals. When professionals act “for the patient’s good” but against their will or without truly incorporating their values, that’s not care – it’s paternalism. Both care and paternalism may relieve suffering or even support autonomy, but they require different levels of justification and should be named honestly as different types of actions.

The paper shows how autonomy in palliative care is more than a signature on a consent form. Autonomy includes “freedom from” pressure and unnecessary interference and “freedom to” shape one’s life and daily routines in line with personal values, even when seriously ill. Because patients are often dependent – physically, emotionally, socially – care necessarily happens in relationships: with staff, family, and the wider system. Good care responds to the person’s expressed needs, is sensitive to context and culture, and accepts that there is rarely one “objectively right” answer. Paternalism, by contrast, appears when the professional’s view of what is best quietly displaces the patient’s intentions, sometimes through nudging, subtle pressure, or “we’ll just decide for you.” The author proposes practical questions teams can ask about each action: Do we really know the patient’s will? Is it authentic? Whose good are we pursuing? What means are we using – gentle information, persuasion, or coercion?

For hospice clinicians the key takeaway is that how we care is as important as what we do.

Clinically, this means pausing to check: Are we truly aligning our symptom management, visit schedules, and care routines with the patient’s story and values or are we slipping into “we know best”?

For administrators, the agency may consider its: Do our policies, documentation demands, and visit targets leave room for relational, patient-led care, or do they push staff toward paternalistic shortcuts?

For marketing and outreach, a core question is: Does our messaging frame hospice as “taking over” and deciding for families, or as walking alongside them and empowering them to live as fully and authentically as possible to the end of life?

Teams could use this article as a springboard for reflection: pick a recent difficult case and ask together – where were we practicing genuine care, and where did we cross into paternalism, even with good intentions?

Link to Full Article

Link to article: Care in Palliative Care