For many, living with advanced dementia is a fate worse than death

My grandmother, whom we called “Nana,” always loved children. Many times, she asked me to give her great-grandchildren.

In 2000, the moment finally arrived. But it didn’t seem to matter. Eagerly, tenderly I lay my newborn son in her arms. She sat motionless, her eyes void. No expression whatsoever. I searched her face, desperately hoping to see some sign of joy … of recollection … of understanding. Nothing. Her eyes were vacant. She could not speak. She did not move.

The reason? My nana had Alzheimer’s disease. It was during this visit that I started to contemplate the quality of life and the certainty of death.

Almost 20 years later, as I lead the largest national organization advocating for patient-driven, end-of-life care, the consensus among our supporters is clear: They (and I) see nothing compassionate or patient-driven about how people with dementia die.

The cultural “norm” in the United States is that life – regardless of the quality of that life – is better than death. Traditionally, love means keeping someone alive, not helping him or her die peacefully. We are so afraid of death that we don’t ask our loved ones what they want. This paralyzing fear of life’s final chapter leaves us guessing, guilt-ridden and trapped in the default mode of our medical system – life-extending tests and treatments – even for a loved one hollowed by dementia

We spoon feed and hydrate people with advanced dementia, even though losing the desire to eat and drink is a natural part of the dying process. We prescribe medical treatments – such as kidney dialysis – even if the person declined this preference in writing when they were capable of making an informed healthcare decision. We marshal every resource to extend life and subject nine out of 10 dementia patients to at least one invasive medical procedure in their last week of life. We don’t merely refuse to let people with dementia die; we do everything possible to keep them alive.

This default mode of our medical system contradicts what most people want. According to a study published by the Journal of the American Medical Association (JAMA), many people regard being confused all the time (45 percent) as a fate worse than death.

We are using medicine and human intervention to keep people alive for years – long past when they would naturally die. People should be able to document their desires before they have lost their mental capacity to make informed healthcare decisions and realize a natural death, if that is their preference.

This is different from – and should not be confused with – extending medical aid-in-dying laws in California, Colorado, Oregon, Vermont, Washington and Washington, D.C. to people with dementia. Conflating advance directives instructing care providers not to artificially prolong the person’s dying process and asking for a prescription for medical aid in dying, as opponents of both options have been doing, is irresponsible and misleading.

Six million people have dementia right now. According to a newly released study that number will grow to 15 million by 2060. Absent a miracle cure for dementia, millions more Americans will suffer from this devastating disease in the decades to come. It’s time we establish a new cultural norm about death: one that respects the individual person’s autonomy to decide their fate.

Kim Callinan is the chief executive officer for the Portland-based Compassion & Choices, the largest national organization devoted exclusively to patient-driven, end-of-life care. She has a Master’s degree in public policy from Georgetown University. 

(3) comments

biker1

Callin's column is so right on. Living with advanced dementia is a fate worse than death, for all concerned. Yet in our Judea-Christian heritage many feel that NOTHING is worse than death. What a mistake. I sincerely hope that we can someday come up with a way to allow people to be given help in passing on. I know I sure would not want to be in the situation to cause my family such pain. The only people I know of that want the status quo are nursing homes.

bettermethanyou

I hope Callin isn't one of those screaming about gun control, because much the violence we see in today's society is founded on the violence in our "entertainment" as well as a lack of respect for life that resulted from Roe. Callin's attitude is just more of the same disrespect for life.

what-if

Why should I think the author would favor gun control? Is it because she has empathy and understanding for a person who has lost her mental ability. Would your gun control concern be because of her empathy and love for her Nana, or is it related to granny's mental problems (or both)?

When a person is vacant and without any feeling or connection to her own family, she seems the same as gone. Empathy for an elderly loved one is not a wish to kill that person, The death comparison is spoken as a way to describe the situation and the effect of Alzheimer's disease. We need to understand the disease and feel for the victims in order to get more support to find ways to prevent and treat the condition. We are willing to study other life threatening diseases, and we understand ways to reduce our chance of getting heart problems and cancer, but nearly nothing is known about how to prevent or treat Alzheimer's.

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