Just before the quarantine started, my wife Becky and I sat with a lawyer redoing our estate plan. “I love that word ‘estate,’” I told the lawyer. “It makes me feel like I own the Ponderosa.”
“Right,” added the attorney. “It’s pretty much just a will.”
She paused. “But there’s more. You’ll need to do an advance directive.”
As a hospice chaplain, I knew this was crucial paperwork that would spell out my health care wishes should I ever be unable to state them clearly. I definitely wanted to get this done because I’d seen the heartache caused by several patients who lacked them.
The moment triggered a lot of memories, but in particular I remembered visiting one patient during my days in 2013 working as a per-diem chaplain at the Sacramento VA Medical Center. Joining me for the visit was our Palliative Care Team consisting of a psychologist, social worker and doctor.
Our patient was an 84-year-old farmer and Korean War veteran whom I’ll call Ken.
As we walked into the room, Ken’s wife of 51 years stood to shake our hands with a self-assured grip. The woman, likely in her 70s, had the well-heeled look of a senior model. Ken, the victim of multiple strokes, did little to greet us, preferring instead the revolving wheel of a TV game show.
With introductions made, we pushed our chairs into a semicircle around Ken’s bed. Our psychologist, a ponytailed man pushing 60, began with screening questions directed toward Ken’s wife. Had her husband been able to dress, feed and bathe himself? Did she think he had much understanding of what was going on with his body?
“No” to all questions.
The doctor then assumed control of the meeting by picking up her stethoscope. She was an athletic woman who’d had some luck cheating her 50s with youthful blue eyes and a pixie cut.
She bent over Ken, searching his expression for understanding, but she saw little to indicate he was aware of his surroundings.
“He really needs a feeding tube,” the doctor concluded.
“Then let’s do that,” the wife said.
Actually, there were few options left for the old farmer. He’d had multiple hospitalizations and suffered several recent bouts of pneumonia. Each illness was followed by weeks in a rehabilitation facility in the Bay Area.
With great sensitivity, the doctor told the woman that even with the feeding tube, Ken would likely choke, aspirating his saliva. In addition, he’d have to be restrained or heavily sedated because stroke-induced confusion would cause Ken to pull out the tube.
“Is this the way your husband wanted to live his later years?” the psychologist asked.
“No,” she said. “I suppose it really isn’t.”
“Sounds like he values the quality of his life,” I reflected.
She nodded. “He knows that heaven awaits.”
The hour-long meeting ended when Ken’s wife agreed to let us implement comfort-care measures.
Comfort care means that every person taking care of Ken would adopt a new goal—one designed not to make Ken get better, but to make him feel better. Our goal shifted to helping him live as well as possible for as long as possible. With the help of social work, psychology and chaplaincy, we would now care for Ken’s whole person.
The real reason behind this difficult meeting was that Ken had failed to have “the talk” with his wife. Like many people, he had failed to discuss crucial questions with loved ones prior to arriving on his deathbed.
Those questions are contained in the advance directive (sometimes called a living will). An advance directive is the document that directs the doctors to follow the wishes of patients who are unable to speak for themselves.
These quarantine days provide you with a crucial time to have “the talk.”
If you don’t have a written directive, or you haven’t appointed someone who can confidently speak for you, then doctors will be obligated to do everything possible to save your life, even if “everything” means a painful delay of your death.
Do you really want to be on a respirator for untold days? Or can you imagine a limit?
Ken was well loved by family and fellow vets, but the truth is that a well-written advance directive could have eased the burden on his family and ensured that he’d have spent his final days with the dignity of his choosing.
If you don’t have an advance directive, I urge you to get started today. For information and to access state-specific documents, visit www.caringinfo.org.
Norris Burkes can be reached at comment@thechaplain.net. Follow us on Facebook, Twitter and Instagram: @insidesacramento. Burkes is available for public speaking at civic organizations, places of worship, veterans groups and more. For details and fees, visit thechaplain.net.
