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. H 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 I’ve 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 problems for years, including my 2018 blot “‘Living Wills’ to Prevent Spoon Feeding at https://nancyvalko.com/?s=living+wills+to+prevent+spoon+feeding

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 https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

2. “Making a Difference: A Guide for Defending the Medically Vulnerable” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

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.