My paternal grandmother Sadie was a tiny woman, born and bred in Richmond, Virginia. She was always immaculately put together and carried herself with dignity. In the summer she wore Lilly Pulitzer skirts and sundresses with matching sweaters, and in winter, Lilly Pulitzer slacks with matching sweaters. She was a strong-willed woman and ran her household, raising two children, in part while her husband served overseas in World War II.
In her mid 70s, she developed dementia and eventually fell out of bed and broke her hip. That was the beginning of the end, as it is for many people in old age. She got to the point that she could no longer take care of herself so full-time caregivers were brought in to keep her safe in her own home.
She had shared with me just a couple of years prior to developing signs of dementia that she was not one who would want to cling to life no matter what. She was in good health then and mentally sharp. She told me she was content with the life that she had lived and was accepting of whatever time she had left, short or long.
During her last year, her body was clearly ready to give up. She had stopped eating, but the caregivers felt they were tasked to keep her alive, no matter what–their employer directed them to keep patients alive. They poured protein shakes down my grandmother’s throat to ensure she would stay alive.
I would go visit her and she would be belted into a chair, no longer of clear mind. She was kept alive, dying slowly and miserably, rather than being allowed to pass.
Every time I saw her I was 100% sure that this is not what she would have wanted, but she hadn’t signed any documents.
Ganny, as her grandchildren called her, had been very clear, two years before dementia swept over her, that she was ready to die. Yet she spent much of the last year of her life strapped to a chair, being force fed by strangers. It still feels wrong to me to this day.
We are moving into an era where patients have a lot more control over their care. All patients deserve to know all the facts and they deserve to make informed decisions. As a baby boomer, I want things my way, and that includes my end-of-life care.
Everyone should have an end-of-life plan that they make when they are compos mentis. If you do not have an end-of-life plan, you are at the mercy of whatever EMT shows up at your house, whatever ambulance picks you up, whatever medical center they take you to, etc. Ambulances are instructed to take people to the nearest hospital, and that may be a religious institution that does not align with your end-of-life values and goals.
People also need to clearly outline their decisions in writing and communicate their wishes with their loved ones and the person they’ve chosen as their health proxy. And loved ones have to respect those decisions. People need to give a lot of thought to, and make peace within their hearts, what it means to commit to implementing those decisions. Choosing a health proxy may mean choosing someone different from your spouse–you have to choose someone who will fight for your wishes to be honored.
We all deserve a death on terms that validate who we are and the life we lived. For some, that means saying no to intrusive end of life care, for others it means settling limits on such care. Others may say they wish to be kept alive no matter what. But no matter what one wants for the end of one’s life, that choice should be theirs.