When my father-in-law was in the last weeks of life, suffering with a diagnosis of advanced pancreatic and liver cancers, he insisted that he felt fine. At one point, not long before he died, he actually told the Hospice nurse that he believed he had received the wrong diagnosis, and that in fact he wasn’t dying at all. The chief reason for this conclusion was that he had been led to expect that horrible pain would accompany his diagnosis and subsequent death.
“I’ve accepted that I’m dying, I’ve put my affairs in order, I’ve said my goodbyes,” he said. “But I’m still here, and I feel fine. Something’s wrong,” he insisted.
A few days later, a well-meaning relative asked him if he was in pain. He looked concerned. “No,” he said, adding, “Should I be?” She was rather insistent that he was perhaps denying his pain and pressed the point: “We can give you medication for your pain. You don’t need to suffer.” This was a man who called the ambulance once when he woke up with a crick in his neck from sleeping the wrong way, so he was not someone who would bravely refuse painkillers if he needed them. And yet the repeated suggestion that he should expect to suffer did in fact cause him a fair amount of mental anguish, if not actual physical pain.
He was most certainly dying, however, and his illness progressed rapidly, though he never experienced the pain he feared. He eventually slipped into a semi-conscious state and died peacefully within a few days of doing so.
My mother, who was under hospice care in her home in another State during the same period of time, appeared to be similarly surprised whenever the topic of her impending death was raised. And raised it was, frequently, by the visiting Hospice nurses, who descended with their laptops and their lists of stock questions. “Have you made funeral plans? Are you aware you’re dying?” Etc. Although she nodded politely in response to these questions, it was clear to me that Mom wasn’t buying into any of it. It wasn’t that she was in denial. Or at least not any more than the rest of us are about our mortality. Most of us just don’t think our own death is imminent, and neither did my mom. Up until the very end, even when she became entirely bedridden, Mom never really acknowledged that she was dying. More than once, even in her final days, she told me, “I think I’m getting stronger.”
A very unfortunate effect of the assisted-suicide movement has been to bring the idea of protracted suffering at the end of life into the public consciousness as the default scenario for death. Beyond that, an attitude is becoming increasingly common that a person who is dying would do well to consider ending the process sooner rather than later, saving family and society at large the trouble and expense of caring for him or her.
Certainly some people suffer, some very much, in their last days. Moreover, the logistics and cost of caring for people at the end of life can be considerable. But, despite the sloganeering motto of proponents of “Choice in Dying,” legal doctor-prescribed death does not promise to improve the options for the dying, even if it dangles a macabre sort of “respite” for caregivers. What will help will be a concerted effort to improve access to better pain management and good palliative care.
As was made clear in a recent Washington Post article, palliative care unfortunately is a long way from being sufficient to meet the needs of the dying, and there is little solid evidence to support claims that palliative care is better in places where assisted suicide is legal. http://www.washingtonpost.com/business/economy/terminal-neglect-how-some-hospices-fail-the-dying/2014/05/03/7d3ac8ce-b8ef-11e3-96ae-f2c36d2b1245_story.html?hpid=z2
Sadly, as many caregivers in the trenches are discovering, where cost is a factor (and where isn’t it?) and where caregivers are in short supply (which is everywhere), the focus increasingly becomes on the logistical problems experienced by the caregivers themselves, and not on the comfort, wishes and choices of the dying person.
Maybe my mom and father-in-law had it right: if you don’t admit you’re dying, no one can pressure you about the manner in which you should do it.