歪歪漫画

Dear Carol: My dad, 83, has received bladder cancer treatments for years, but now his cancer has become aggressive. Unfortunately, so has his oncologist. Dad has rarely questioned his doctors, so even though he鈥檚 in agony, he鈥檚 accepting each new treatment without asking for alternatives. He鈥檚 always been emphatic that when treatments don鈥檛 work, he wanted hospice care, so we鈥檙e now determined to transfer him. It鈥檚 a process, but we鈥檙e getting there so I鈥檓 not writing for advice. I just want to know why alternatives to last-ditch treatments that simply 鈥渂uy time" aren鈥檛 better explained to patients. 鈥� GM.

Dear GM: Doctors are trained to cure, which is admirable if a cure is feasible. In many instances, though, giving a patient, particularly an older patient, 鈥渕ore time鈥� at the expense of comfort and family time extends suffering rather than life. This trade-off should be clearly explained to patients as well as their families and discussed in view of overall end-of-life wishes.

Your note reminded me of my neighbor who, like your dad, had lived with bladder cancer for years. Following his death, I expressed my sympathy to his widow. After thanking me for my words, this normally gentle woman launched into a livid rant over her husband鈥檚 care. The doctor had routinely ordered excruciating treatments right up to the day her husband died. The alternative of comfort care was not even discussed.

Your note spurred me to share information about 鈥淐aregivers Are Mad as Hell: Rants from the Wife of the Very Sick Man in Room 5029,鈥� by Ann Brenoff.

Brenoff cared for her not-so-elderly husband who suffered from kidney disease 鈥� and yes, she鈥檚 on a rant. That said, she鈥檚 a professional writer with a Pulitzer, no less, making her passion-packed rant relatable as well as informative.

Her story expands on some well-documented concepts:

• Family caregivers, whether spouses or adult children, are often ignored by medical teams.
• Family caregivers are routinely required to perform medical duties far beyond their experience with little or no training in this area.
• In Brenoff鈥檚 husband鈥檚 case, increasingly disabling, painful and useless treatments were continued to give her husband in their words 鈥渕ore time.鈥�

While 鈥淢ad as Hell鈥� is a personal book, it鈥檚 broadly useful. Readers will relate to Brenoff鈥檚 fury over her husband鈥檚 care. They鈥檒l also root for her as she struggles through the daunting aftermath of his death such as bills that she can鈥檛 cancel without his approval. They鈥檒l also cheer as she struggles to establish her identity as a widow, and eventually remarries.

I encourage caregivers of terminally ill people who feel dismissed, ignored and angry to read 鈥淢ad as Hell.鈥� You鈥檒l feel a connection with other caregivers while you gain from Brenoff's passionate energy.

To you, GM, I鈥檒l assure you that most of us who have been long-term caregivers for older adults learn that when it comes to treatments in the last stages of life, less is often more. My heart is with you as you stand with your dad during this painful time.