When Food and Water Withdrawal is Recommended to Hasten Death

This article was published on Nancy Valko's blog on October 9, 2024

Nancy Valko

By Nancy Valko

Recently, I was contacted by a man who was concerned about hospice care for his mother.

He wrote:

“I spoke to one hospice service that was recommended and asked about AHN (artificial hydration and nutrition) and I was basically told that if my mother became unconscious, they would not attempt to provide AHN. My mother has dementia and we’ve had a few scares where we were unsure she would recover. I’d like to understand what guideline I should expect the hospice to follow and whether hospice is even worth considering. Are there prescriptive standards of care that I can reference or could you tell me basically what routine care look like?”

I wrote back that I understood his concerns, especially since I recently lost a brother with dementia, diabetes and Crohn’s disease after a second fall down stairs. He had trouble eating so the doctors recommended a feeding tube.

Unfortunately, a person from palliative care told my sister-in-law that he would not improve so she decided to refuse a feeding tube.

I told her that newer feeding tubes were more comfortable, could make him feel better and were worth a try but she rejected this. She said my brother told her he would not want to live if he developed dementia - like our mother.

It took 4 long days for him to die.

I also told him that I have been writing about this problem for years, including my 2018 blog article “‘Living Wills’ to Prevent Spoon Feeding at: (Link).

I have seen the deterioration of medical ethics over 50 years as a nurse from requiring life-sustaining treatment unless it was medically futile or excessively burdensome to whatever is legal.

I would recommend to you two resources from the Healthcare Advocacy and Leadership Organization (HALO):

1. “The Food and Water Dilemma” at: (Link).

2. “Making a Difference: A Guide for Defending the Medically Vulnerable” at: (Link).

Conclusion

I have worked in hospice, critical care, etc. for decades and I was glad to be able to care for my patients, my mother and others so that they had dignity, comfort and emotional support at the end of life. I hope these resources from HALO can help bring vital information, peace and comfort to others and their families.

Nancy Valko was a hospice and critical care nurse for many years.

Awakening the Unresponsive Patient

This article was published by HALO on June 7, 2023

By Julie Grimstad

Julie Grimstad

On the night of January 14, 2023, my 19-year-old grandson Joshua was in a terrible car accident. Fortunate to be alive, he was care-flighted to a trauma center in Fort Worth, Texas. For several weeks, Joshua was unresponsive. After a while, he would open his eyes but there was no sign that he was aware of his surroundings. A neurosurgeon told Josh's father and me that he did not expect Josh to make any further progress!

It was then that Nancy Valko, RN, reminded me of a little book—A Gentle Approach—written by a friend nearly 30 years ago. The author, Jane D. Hoyt, has gone to her eternal reward, but I could hear her voice of experience encouraging me, “Don’t ever give up.” I doubt that this remarkable booklet is still in print. Therefore, I will share with you several of the 38 instructions it contains. (To obtain the entire invaluable list, email feedback@halovoice.org with your request.) These tips for communicating with an unresponsive patient resulted from Jane Hoyt’s years of experience helping semiconscious and presumed comatose people recover consciousness and mobility.

Above all, talk to the person! Keep encouraging the person to respond, no matter what the apparent extent of her or his disability. Some people who appear unconscious are “locked in” – a physical paralysis – but actually aware of their surroundings.

If you suspect that the person may be in a “locked-in” state, ask the person to move his or her eyes upward. (One of the capacities that can survive damage causing the “locked-in” syndrome is the ability to move one’s eyes upward.)

If the person moves in any way, try to document what was happening prior to the activity. For example: “John startled and turned to the left when the door to the left slammed shut at 6:16 p.m., 7/12/94.” Speculate about what stimulus leads to what response. If possible, repeat a stimulus that appears to produce a response.

Gently and repeatedly remind the person of his or her value to you no matter what the anticipated extent of recovery.

If the person seems just to stare, position your face—or whatever should be the center of attention—exactly where the person’s eyes seem to be looking.

In the patient’s room, display photographs of him or her prior to hospitalization, but take special care to avoid depressing comparisons. Bring pictures of family and close friends to show the person whenever her or his eyes are open. Hold the picture about one foot from the person’s face and slowly move the picture a few inches to each side in case his visual field is impaired.

When leaving, no matter for how long, never say “Good-bye” since that has a ring of finality to it. Instead say, “I’ll see you __________” (giving your best guess as to when you’ll be back), or “I’m not sure when I can return, but do remember I’ll be with you in thought all the time,” or “I’ll be back at six. That’s in three hours. Then you and I can watch the news together.”

Hopefully, you will never need these instructions but if you do, remember, “Don’t ever give up!”

Joshua is now fully aware, learning to speak again, and slowly gaining command of his limbs. Thanks be to God, to all the therapists who have helped Josh, to his family and friends who never gave up, and to everyone who prayed and is still praying for Josh’s full recovery.

Humpty Dumpty’s Language Lesson. Dr Husel found not guilty in 14 counts of murder.

The following article was published by the Healthcare Advocacy and Leadership Organization (HALO).

“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.” “The question is,” said Alice, “whether you can make words mean so many different things.” “The question is,” said Humpty Dumpty, “which is to be master—that is all.”      (Lewis Carroll, Alice in Wonderland)

Words matter. In the article Jury Finds Dr. William Husel NOT Guilty on All 14 Counts of Murder, we learn that, after deliberating for five days, the jury found former physician William Husel not guilty on charges of overdosing patients with fentanyl and benzodiazepines because he was purportedly providing "comfort care". Even though the doses of these drugs were determined to be lethal, the defense had claimed he did not have "intent" to kill.

“And, so it goes… patients having their already fragile lives shortened with blatantly high doses of controlled substances beyond the standards of practice, while the professionals who order and administer these doses hide behind this concept of “comfort care”. We know it goes on in hospices around the country. And this verdict welcomes more of it,” stated HALO advisor Cristen Krebs, DNP, ANP-BC.

The words we use — and how we use them — make a difference. Calling murder “comfort care” makes evil appear good. Humpty Dumpty-style language manipulation is an effective strategy for marketing the culture of death. 

WARNING: In 2016, the U.S. Food and Drug Administration (FDA) ordered that its “strongest warnings” be added to labels on opioid pain medications and benzodiazepines after finding that the growing use of opioid medicines combined with benzodiazepines or other drugs that depress the central nervous system has resulted in serious side effects, including slowed or difficult breathing, and deaths. FDA Drug Safety Communication: FDA warns about serious risks and death when combining opioid pain or cough medicines with benzodiazepines; requires its strongest warning | FDA

Also, be wary of combinations of drugs such as morphine, fentanyl, Ativan, and Haldol, as well as the administration of opioids when they are not necessary for pain relief or the amount and/or frequency seems excessive. Be suspicious of any medication, especially an opioid or benzodiazepine (primarily used to treat anxiety), given every hour or two.

To help you navigate this difficult issue, please read HALO’s fact sheet 6-HALO-Drugs-Commonly-Used-in-Hospice-and-Palliative-Care.pdf (halovoice.org)