At age 95, my grandmother was asked how it felt to be so close to the end of life, and if she had any deep thoughts to share. She thought for a moment and then replied brightly, “I think you’re alive until you’re dead.”
What a simple but profound thought. It may actually turn out to be the basis of a life-saving strategy for frail elderly people in Vermont who wish to die naturally, but, because of Act 39, can no longer rely on the protection of the law to let them do so.
Modern theories about death and dying propose that we carefully plan for our deaths. It makes sense to designate who will make your health care decisions if you are unable to do so. Practical plans about where you want to live as you age and how you will pay for it and what you will do if you need help with daily tasks are important at any stage of life, but particularly at twilight, and especially if you do not have unlimited financial resources, or a spouse or children on whom you can rely to care for you.
My mother passed away in her home at age 90 after six months in hospice care in a State which still protects its citizens from physician assisted suicide. But even there, we experienced a discomfiting adherence to a “you are dying” attitude that was not well received by my mother. Each week, the hospice nurse arrived with her laptop and list of questions to review Mom’s terminal diagnosis and ask, among other things, “Have you made your funeral plans?”
Mom’s “strategy,” if you will, to deal with this, was denial, and I wouldn’t be surprised if her medical chart said just that. She really did not at any point acknowledge her terminal condition, and dismissed such questions with an offhand, “My daughter has all that information.” Just a few days before she died peacefully in her sleep (without drugs), I recall her saying she thought she was getting better. Her optimism hurt nothing and undoubtedly enhanced the quality of her last days.
Some might point out problems with such an approach. However, Mom’s strategy might be the best protection for elders in Vermont moving forward. Because of Act 39, planning for death and dying here now has to include a conversation about why you might want to consider using a lethal prescription to attempt to end your life earlier than nature intended. Act 39 specifically references the Patient’s Bill of Rights for Palliative Care and Pain Management, reiterating that patients have a right to be informed of “all available options” related to terminal care. What this means is that even clinicians who oppose Act 39 on ethical grounds are required to inform terminal patients that Act 39 is available, whether they ask about it or not.
In introducing an amendment to repeal Act 39 during last week’s House debate over S.108, Representative Anne Donahue (R-Northfield) told of a 90 year old woman in a nursing home to whom she had spoken. The woman had become frustrated after being repeatedly informed by caregivers that she had the option to use Act 39 to end her life. The woman has never been diagnosed with any terminal illness, “…other than being age 90,” Donahue said.
This woman is “feisty,” and has strong family support, according to Donahue, and ultimately informed the staff of the nursing home that she did not want to hear any more about Act 39. But, asked Donahue, “What if she wasn’t surrounded by loving family? What if instead she even knew – or perceived – that her family felt she was a burden?”
A person in that situation might well feel pressure to ask for a lethal prescription.
Health care workers have been trained that “talking about dying” is an essential part of caring for patients near the end of life. The idea that we as a culture need not be afraid of death (which comes to all of us eventually) and that talking frankly about mortality will make planning for the practical realities related to dying less daunting, is reasonable. But now that we have introduced assisted suicide into the palette of “care options” here in Vermont, we might want to rethink how far we’ve let the pendulum swing. For an elderly or disabled person with even a potentially terminal condition, the seemingly endless parade of reminders that “you are dying”, followed up by, “you have the option to end this with a lethal prescription,” could make even the most determinedly cheerful person wish to die.
Until we can repeal this horrible law, it is more important than ever for Vermonters to complete an advance directive (and use a good one that reflects your ethics) or, at the very least, assign a trusted loved one to make your medical decisions if you become unable to do so.
After that, you may want to choose my mother’s approach to her terminal diagnosis, and feign ignorance.
You’re alive until you’re dead.