We know it’s hard to talk about death. New research in the Journal of Pain and Symptom Management highlights why we should get better at it.
For the study, researchers asked caregivers of 402 people who died of cancer between 2005 and 2010 in Toronto to fill out the Quality of Dying and Death (QODD) questionnaire, a clinically respected measure for gauging what researchers call “quality of death” — that is, to what extent the person who died was comfortable, free of painful symptoms, and so on.
Overall, the caregivers rated the quality of these deaths pretty highly — 39 percent were in the “good” to “almost perfect” range of the QODD scale, while 61 percent were in the “neither good nor bad” range. That doesn’t tell us a huge amount, though, because as the researchers point out, this is an affluent patient sample that comes from a city (and country) with a very good health-care system.
What is telling is the percentage of patients who didn’t die at home.
Despite the fact that in our study setting of urban Toronto, there is availability of universally funded home-based palliative care, approximately one-third of these cancer deaths examined occurred at home, whereas 40% occurred in an inpatient hospice/palliative care unit/care facility and 28% in an acute care hospital. Even for those patients followed by the home palliative care program, only 54% died at home. Home death in our study was associated with better overall quality of dying and death and better symptom control and death preparation than non-home death, and there was no significant difference between death in an acute care hospital and death in an inpatient hospice/palliative care unit/care facility. Even in an ‘‘ideal’’ environment where funding and availability of homebased palliative care services would allow individuals with cancer the opportunity to die where they wish, those with difficult symptoms and without advance care planning might continue to die in institutional settings.
None of this is to suggest that a death in a hospital is necessarily an agonizing one — the researchers are quick to point out that this isn’t the case — but there’s still data here to suggest that people who could die at home, meaning a more comfortable experience both for them and for their families, aren’t.
Why? Sarah Hales, the study’s lead author, said in an email it’s “partly due to lack of good advanced care planning (still not good at talking about this ahead of time with our patients) but also because deaths at home take a lot of resources, a willing, capable and available family, and an uncomplicated disease to manage—many patients plan to die at home but end up in hospital due to difficult to control symptoms (pain, agitation, etc.).”
Some of this is beyond anyone’s control, of course, but some of it comes down to the excruciatingly difficult question of when and how a family comes together to decide one of its members is dying and it’s time to have that happen at home (assuming, of course, the family has the resources to make this decision, which many do not). As a general rule, it’s not something people are good at — for totally understandable reasons — but studies like this one highlight how important it is to face the reality of an end-of-life situation as frankly and realistically as possible.