Patient centred deathBMJ 2003; 327 doi: https://doi.org/10.1136/bmj.327.7408.174 (Published 24 July 2003) Cite this as: BMJ 2003;327:174
We need better, more innovative research on patients' views on dying
A good death has always been important in all cultures. To achieve your chosen afterlife you died either well (euthanatos) or nobly (kalosthanein). But what is a good death in a world that for many is post-religious and medicalised? We know something from research on patients and their families—but not nearly enough. We need much better research that uses innovative and different methods.
We don't have good data on how people die (as opposed to what they die of), but there is a strong impression that many die badly.1 People do not die in the places they wish or with the peace they desire. Probably too many die alone, in pain, terrified, mentally unaware, without dignity, or feeling alienated. People who are poor, from ethnic minorities, or marginalised may have even worse deaths.
Modern dying involves a struggle for control. Some doctors fear failure when they cannot keep their patients living. Families, filled with grief and sometimes guilt, often have their own strong views on how and where patients should die. This can lead to struggles with doctors, who may see such assertions as an affront to their authority. The “needs” of the dying patient are defined and thus filtered through the views of family and healthcare professionals.
So while debates about a good death are hardly new, what has largely been a professional and expert driven exercise now needs to incorporate patients' views. The authority over dying must now be invested in patients.2 Patients' concepts of a good death should guide our efforts to make deaths better.
We know that patients wish for their financial, emotional, and spiritual needs to be addressed, and for a chance to say goodbye3 4—hardly the stuff of fancy medical technology. What troubles patients is a lack of autonomy over the circumstances of their dying—and, in particular, powerlessness in decisions over medical treatments, including those that prolong life. Indeed, it seems the fear of death is being replaced by the fear of dying.
But this research base is slim, derived mostly from people with cancer and patients in hospice settings and from studies that used quantitative designs. We know little about the needs and desires of people from non-Western cultures, patients with dementias and non-malignant conditions, and dying children. Research with relatively healthy people has produced expectations for a good death, but whether these forecasts are realised or change (and why) still raises several questions. What does it “mean” for patients to say they wish to die with dignity, or quietly, or suddenly?3 What is the meaning of the desire for death?5 6 Does suffering have any meaning? How do these notions vary across cultures, time, and space?
And how do we access dying patients' perspectives? Research in palliative care settings is notoriously difficult7; it is ripe for innovation, such as the use of advance consent8 and novel qualitative methods. Ethnography, phenomenology, and textual analysis—once the province of anthropologists and sociologists—can provide ample insights. Glaser and Strauss's classic hospital ethnography in the 1960s transformed modern understandings of dying. Their study revealed how the doctor's diagnosis of dying shaped the interactions and decisions of staff, family, and the patient, resulting in either closed, denied, or open communication about dying. These different awareness contexts produce different experiences of dying for the patient.9
But the search for meaning cannot be located in medical settings alone,10 so drawing from the humanities is crucial. The Art of Dying programme in London (www.kcl.ac.uk/depsta/humanities/art_of_dying/) and the Seeing the Difference project in California (http://seeingthedifference.berkeley.edu/) brought together artists, humanists, and medical professionals to deconstruct the representations and realities of death, literally opening up new “ways of seeing” death and dying. The medical view, for example, takes the body as literal: an entity on which to implement physical and psychological change. The humanist's view sees the body as a site of multiple layers of meaning to be explored and interpreted. The artist's creation of the body gives form to the space between the physical and the metaphysical, the “unknowable.” Together these frameworks of dying help us to imagine and conceptualise the care and empathy that are needed to ensure a good death for our patients.
What we have thus far failed to do, however, is to combine these innovative frameworks with research that draws explicitly on patients' perspectives. Worse, we have failed to do so with sensitivity to the differences across patients' cultures, religions, and social circumstances. Death and dying deserve much better research, and this is research from which all of us can benefit. Perhaps a major research programme into death that uses many different methods and focuses on the patient would be a way to bring us back to the lost realisation that death is central to life.
Competing interests None declared.