A fundamental right to be able to die in peace
I’VE BEEN to Fairview, N.J., twice in my life. The first time was to bury my grandfather on a rainy day in 1999. The second was on July 2, when I returned to do the same for my grandmother. It was another appropriately gray afternoon, the air pregnant with mist and tears. The mourners shoveled piles of dense mud into her grave, as is customary at Jewish funerals.
A week before she passed, I saw her for the last time at a hospital in White Plains, N.Y. She was communicative, if not voluble, when roused. She grinned widely at her assembled family. But most of the time she slept, and when she did wake, she lamented her depleted energy and withered body.
My father was at her side nearly nonstop while she was moved to a hospice, and her faculties wilted further. With some of her last words she asked him why it was taking so long to die.
Usually, the words of the dying are accorded particular weight. When spoken by the famous — and, interestingly, by convicts facing the ultimate punishment — they are recorded for posterity. Even those of us less in the limelight can expect that our final utterances will carry greater force than they otherwise would. Unless those final words reflect, as my grandmother’s did, a desire to die.
Massachusetts voters considered this difficult truth in last November’s election, when a ballot question asked us to decide whether terminally ill patients of sound mind should be allowed to request a physician’s aid in dying. Had voters approved the measure, it would have been possible for competent terminally ill patients, acting on their own volition with the approval of a physician, to receive a life-ending dose of drugs. They would then have had the option to self-administer the drugs.
And as late as Sept. 27, that approval seemed imminent. A Globe poll released that day showed 68 percent of voters backing Question 2. But in the last weeks of the campaign, the vastly better funded opposition turned a referendum on the rights of the dying into a made-for-TV horror show about abuse of the disabled and inadequate control of life-ending drugs, perceived flaws of the proposed legislation that have never materialized in any significant measure in other states with nearly identical laws. The proposal was voted down 51 to 49 percent.
But death with dignity has not met its demise in the Commonwealth. It is on the table in the current legislative session, thanks to a bill put forward earlier this year by Democratic state Representative Louis Kafka of Stoughton and cosponsored by 15 other legislators. The bill is not substantially different from the one that voters rejected last fall, which doesn’t bode well for its passage. But it is important that it be granted a public hearing so that opponents can air their reasonable grievances and the bill can be amended in response.
If the bill is given the debate it deserves, a central element of that debate should be the fact that, in principle, the law already acknowledges an individual right to manage the prolonging of one’s own life. For instance, one may refuse extraordinary life-extending measures such as cardiac resuscitation, tube feeding, and mechanical respiration. And while medical technology can keep certain vegetative patients alive, there is no requirement that it do so.
These rules for dealing with end-of-life decisions differ in important ways from the proposed aid-in-dying legislation. But they are fundamentally related in affirming people’s right to die in peace, according to the dictates of their own will. These are rules for the living. They enable a free person to decide if she prefers a grinding march toward death, incapacitated by palliative drugs, or a different path. The ability to make that decision brings comfort and power to the living.
The legislation before the House would not do anything for a person like my grandmother, lying on her deathbed and yearning for escape. She would not be considered competent according to the bill’s strict standards. But it might allow a few people to avoid the suffering she experienced. And it would allow a great many more to act as their consciences move them.
Simon Waxman is managing editor of Boston Review.