The quote from bioethics research organization, The Hastings Center, that “death is an inevitable aspect of the human condition” but “dying badly is not” poses the question “what is dying badly and how does one avoid it?”
A lot of “dying badly” is the result of getting stuck riding the “do everything” hurdy-gurdy, so that your last few hours/days/weeks/months are spent in a fruitless battle trying to get cured of whatever you are dying from – with surgery, chemotherapy, and God knows what other interventions.
Often finishing up in an ICU bed, tethered by a tube in every orifice. Sedated and/or on a ventilator, unable to talk or interact. And thus unable to find the closure that you and your loved ones need.
Definitive versus Palliative
People often finish up like this because they don’t understand the difference between definitive and palliative care.
Definitive means you are doing everything to try to eradicate the illness. Cure the cancer. Get the heart, lungs, liver, and kidneys working normally again or find some substitute – like dialysis.
Palliative (sometimes called comfort care), is focused on managing symptoms, treating the discomfort and disability. The emphasis is not on curing the underlying disease, but on quality of life.
Definitive treatments with surgery or chemotherapy for example are nearly always bad for your quality of life in the short term – with pain, nausea, debility etc. But with the hope of cure. If it doesn’t work of course . . . . . . .
It can be impossible to know what are the exact odds of getting cured. And to know how bad the adverse effects of treatment will be. This, and a host of other considerations – like what friends and family thinks you should do - makes these life and death kinds of decisions anguished and incredibly difficult.
Our culture, however, and that of the medical profession especially, does not accept death very philosophically. Very willingly.
Among doctors it is seen as a sign of failure. So, people tend to be egged on to go the definitive care rout. The do everything hurdy-gurdy – aided by the connotation of the language we use - the positive spin of “soldiering on,” versus the wimping out implication of “throwing in the towel” of palliative care.
Certainly “throwing in the towel” is the not uncommon characterization applied to calling in hospice - who are of course the experts, and embodiment, of palliative care.
So, a common scenario is a referral made to hospice, but only a couple of weeks before the person dies, when it is too late for much of the benefit hospice can provide (but then, once the benefits of hospice have been experienced, asking “why didn’t we do this sooner?”).
So if you have a potentially terminal illness, it’s important to understand this fundamental difference in management – and of course to make your wishes known with an advance directive (“living will”).
But that’s a whole other post.
