How Should a Nurse Support Patients in Choosing a Time to Die?

Two of my six aunts died from Alzheimer disease (AD). They didn’t live nearby, so when I saw them every few months, the deterioration from the illness was evident. Both showed the same behavioral trends: some mild forgetfulness and repetitive questioning at first, then what seemed a prolonged period of incessant questions and bewilderment and anxiety over not understanding where they were or why they were there, who others were. Wandering outside at all hours, agitation and resistance to hygiene, eventually disappearing into a nonverbal, nonresponsive state.

It was painful to watch these formerly active, smart, and vibrant women decline in such a way. The most painful part was when they still understood that they were becoming confused and how frightened that made them.

Now there are alternatives available for those who don’t want to go down that road—but they are hard to come by, especially if you live in the United States.

People with dementia face particularly high hurdles.

A special feature in the March issue, “Medical Aid in Dying: What Every Nurse Needs to Know,” covers medical aid in dying and the nurse’s appropriate role in many end-of-life circumstances, including the ethically and logistically challenging situations of those with dementia who seek some agency over how […]

If Nurses Aged in Reverse

“No—no!” shrieked my 95-year-old patient with dementia as I turned her to her side with the help of my nursing assistant (now called a patient care tech, 30 years later).

The three daughters sitting at her bedside inhaled deeply, their eyes wide. I looked over at them, calmly explaining that their mom was just frightened, and then in a soft voice said to my patient, “Don’t worry, Mrs. Smith, we won’t let you fall,” as she continued to scream. We positioned pillows against her back, and another between her knees. As we saw the family relax, and the patient’s screams turn to a barely audible whimper, I caressed her back and felt satisfied that all was well.

Fast-forward to my retirement. Having inherited my parents’ degenerative joint disease, at age 72 I have certain specific ways to sleep so that my left shoulder doesn’t hurt, my left hip bursitis doesn’t flare, and my right arm doesn’t get numb and tingly from a pillow that’s too puffy, causing hyperflexion of my cervical vertebrae.

Never assume what the patient’s feeling.

I have flashbacks from the days I thought I was an efficient nurse—I dread having someone, someday, assume that I am just frightened in their attempts to keep me on a turning schedule to prevent pressure ulcers. While it’s […]

2021-08-30T14:19:59-04:00August 30th, 2021|patient experience, Patients|1 Comment

Joy, Relief, Reverence: Positive Side Effects of a First COVID-19 Vaccination

A family’s long year, brushed by COVID-19.

Photo by Jon Tyson on Unsplash

On February 23, 2020, three days before a flight to Israel to speak at a nursing conference, I received a message from the host that the ministry of health had issued a restriction to stop all conferences and meetings in the health care system because of the coronavirus. I had other business scheduled, so I boarded the flight. While in Israel, I followed the global health news, and returned home a week later fully aware that COVID-19 was an emerging pandemic. But when I landed and entered the international arrivals terminal at Newark Airport, business was as usual and only a handful of us in line wore masks going through customs.

It’s been a hard year since that time. My son, a healthy 27-year-old, had COVID in late March, during the worst surge of positive cases and deaths in New York City. Testing wasn’t available. He lived a subway ride away. For 10 days, I monitored his symptoms by texts, along with his primary care provider. He fully recovered. My 95-year-old mother died in April in a  New York State assisted living facility. We don’t believe her death was COVID related. Restrictions prevented my visiting her for […]

How Do You Feel When Your Patients Can’t Afford Care?

“Every day in the United States, nurses watch patients forgo beneficial treatment they cannot afford despite nursing’s moral standard to treat patients without regard to financial condition.”

How often have you been left, pretty much on your own, to figure out a way that your uninsured and/or homeless patients have access to something (anything!) that will maintain their health when you aren’t with them? Are there meds they can’t pay for? Do they need prenatal care that they can’t afford? Can they possibly function without home care of some kind?

Moral distress as a call to seek systemic change.

In “Ethical Issues: The Moral Distress of Nurses When Patients Forgo Treatment Because of Cost” in this month’s AJN (free to access until October 7), Douglas Olsen and Linda Keilman discuss the moral distress of nurses when we are unable to meet the needs of patients who don’t have the money to pay for care in our for-profit health care system. […]

Time Matters, Priorities Change: A Nurse and Cancer Survivor on Living with the Pandemic

Everything is different, and the same.

Michael Himbeault/Wikimedia Commons

It’s going to be a while before things get to normal, if they ever do. It’s more like the future will become the normal.

The only thing in my experience I can liken it to is my cancer survivorship: you start living your life again, but everything is different. Priorities change. Your sense of safety never fully returns, yet because of this you become more purposeful in living: time matters. It’s as though you go on living, but learn a new way to do it.

There’s actually a sense of freedom accompanying the realization that nothing/no one lasts forever.

Finding a middle ground.

After I completed treatment, I watched the Jeff Bridges film Fearless (1993). His character is a survivor of a horrendous airliner crash, and he develops a sense of invincibility as a way of coping. I understood his character really well. You either hide in fear, or you go forward as if you are invincible. Eventually, you discover a middle ground. […]

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