Today citizens of the Commonwealth of Massachusetts will decide whether or not it should be legal for doctors to prescribe a lethal dose of medication for a patient with a terminal diagnosis who decides they want to end their own life. It’s called the “Death With Dignity” Initiative, Question 2. The legislation follows similar legislation in Oregon, Washington, and Montana and once again seeks to address a complex, emotionally charged, communication-resistant issue with the blunt instrument of legal policymaking.
I wish everyone could take a few deep breaths, actually sit down together, and finally talk about what’s really going on instead of skipping the discussion part and heading straight for the polls.
WE ALL NEED TO START HAVING THOSE LONG, THOUGHTFUL CONVERSATIONS WITH EACH OTHER…WITH OUR CHILDREN AND SPOUSES AND PARENTS AND FRIENDS, WITH OUR DOCTORS…ABOUT HOW SCARED WE ARE OF DYING AND WHAT WOULD HELP MAKE IT LESS SCARY FOR US.
One of the biggest obstacles I see to this happening right now is the fact that most people simply don’t know enough about what dying entails to have a useful conversation. The amount of misinformation out there is incredible…not to mention the levels of pure superstition still operating…and there’s almost no practical, nitty-gritty kind of educational outreach to counter it all with.
Why? Because most people don’t want to be educated about dying. One of the oldest and most powerful superstitions around says that talking about dying is morbid and unhealthy at best and risky at worst, so for godsakes don’t do it yourself and definitely stay away from anyone else who’s talking about it.
Good luck trying to fill an About Dying classroom after that.
We’ve just battled through one of the variations on this superstition with my father-in-law, Mon Pere. After years of no symptoms his cancer finally metastasized and started generating pain. Lots and lots of pain. Lots. He was seeing three different doctors from three different offices with three different perspectives of what was going on, depending on their specialty. In spite of the escalating urgency of the situation, it was often a week before any of them could see him after which they’d prescribe medications that were largely uncoordinated with no follow-up to make sure he was taking them correctly or that they were working.
Needless to say, none of this was getting his pain under control, but the meds were starting to have undesirable side-effects which made things even worse. Mon Pere’s decline started to escalate and he was going downhill fast. He’d wake up every morning and cry helplessly for hours, he couldn’t attend to a growing number of his own needs, and he was having some serious thoughts about suicide because, if his doctors couldn’t do anything, it was starting to look like death might be the only thing that would provide effective pain relief.
Here’s where the battle with the above-mentioned superstition began.
I wanted him to enroll in hospice care immediately. Why? Because one of the specialties of hospice lies in managing precisely the kind of escalating pain he was experiencing and I felt a good hospice team could probably get it under control and maybe even eliminate it.
I wanted him to enroll in hospice so he could return to his life and start living again.
And he was eligible for hospice care. Mon Pere didn’t want aggressive treatment for his cancer…he wasn’t about to subject himself to chemo or radiation at his age or stage of illness. But when I…along with two of his doctors, his physician-son, his R.N. daughter, and his nurse-practitioner ex-wife…first urged him to enroll in hospice, he balked.
“I don’t think I’m dying yet,” he told me and everyone else. Again and again. “I think I have a lot more time.”
Mon Pere was laboring under one of the most common misunderstandings about hospice. He was afraid that signing up was tantamount to giving up, to being written off, or worse, actually hurried along to the grave, and because this pernicious superstition is so pervasive and widespread, like most people he was having trouble understanding what I kept trying to tell him, that we just wanted him under the care of the specialists who knew how to treat what he was actually dealing with.
We didn’t want him to enroll in hospice to die, we wanted him to enroll in hospice so he could LIVE again…right now and a hell of a lot better…because by that point he wasn’t living anymore. Most people still don’t understand that uncontrolled pain is not just a misery, it’s a killer. His pain had not only stripped him of any joy and pleasure in his life, it was actually speeding up his decline.
It’s really a testament to how much he loves and trusts his family that he agreed to enroll in spite of his confusion and misgivings. And it’s been everything and more that we hoped for. His pain symptoms started to ease up within a few days of the medication changes and are now pretty much gone. He’s back to taking his walks, albeit with a cane, and savoring the colors of autumn. He looked at me once, eyes widening a little with the surprise of it all, and said the world has never looked so beautiful before. And he confided to the hubster the other day that if this is what dying is like…if there’s no pain and all he has to do is slow and then stop and eventually fall asleep and not wake up again…well then he can do that.
He was so relieved.
He can’t say enough good things about hospice now. He’s like a convert because he understands what it’s really for…that it’s not a place to throw away dying people. It’s a place for those who still truly, deeply want to live the time they have left.
Because this gross misunderstanding about hospice and palliative care continues, there are a whole lot of people out there missing out on the real gifts they bring to the table. Too many people have come to believe, like Mon Pere did, that dying of necessity involves a cascade of escalating, uncontrolled, and unbearable symptoms that the medical system can no longer do anything about. They believe there is no dignity in that kind of death and honestly, I agree with them. When people die like that…and they still do, every day…it means that our whole system has totally failed.
But obviously, I don’t agree that suicide is the first and best alternative. I believe it should be among the last options because, like Mon Pere, most people would rather live IF IT COULD STILL BE A GOOD LIFE.
Mon Pere did consider suicide at one point but not because he wanted to die, it was because he needed relief. His life was fast becoming so unendurable that ending it seemed like the only alternative and, if our local legislation and resources had evolved to favor assisted suicide over hospice care, he might very well have availed himself of that option by now.
Which would have been another dismal failure of our system because dying wasn’t what he wanted at all.
The fact is a majority of people think about suicide at some point when facing a terminal diagnosis, especially in the early stages. It’s natural and there’s nothing wrong with it. It’s usually either a panic response to the fear that they might wind up trapped in something unendurable or a despair response that the life they have left will be meaningless.
With the help of those experienced in end-of-life care, people usually get past this stage. And sometimes they even move on to experience the sweetness and wonder of a world made luminous by dying in it. And a lot MORE people could if we could just somehow get past that other pernicious superstition that gets in the way all the time, the one that claims dying is a taboo topic that should never be discussed.
It’s impossible you know, to explore solutions for a problem without actually talking about it.
I wish real, deep, wide-ranging, honest, courageous, mass conversations about dying could start taking place before we pass any more legislation making suicide so easily available by simple prescription. It’s not that I believe suicide is immoral or sinful or wrong. I don’t. There are cases…both with those who are terminally ill and others…where someone’s life has truly become so chronically unendurable to them that death is a mercy and a gift.
But these cases are the rare exception and not the rule. And long before reaching that point there are other really, really good options to explore, if only we’d be willing to TALK about them.
copyright Dia Osborn 2012