Hospice Vs. Home Health Care

Pinkilee asked...

I signed my mother up for a hospice care service. Originally when I was told about this group I was told it was not like the traditional hospice care services. They do furnish a nurse to come once a week and check on mom,a social worker an a chaplain. I have access to respite care facilities for 5 days out of a month if i chose and a medical doctor. Recently the doctor my mom had been using ordered a CT scan of her brain because she had been hallucinating. The nurse from hospice care called and asked why? He said if mom went in for the scan hospice would drop her at the the time he called I was on my way to my niece's funeral and didn't really want to dicuss pros and cons with him,so I just postponed the CT scan. Since then I have learned that under hospice they will not pay for any type preventive procedures such as flu shots,scans,physical therapy or occupational therapy. So now I must make the decision do I discontinue the hospice service and try to get home health care? For someone in the moderate(late)stages of dementia what would you recommend?

Expert Answer

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

You're correct that hospice doesn't offer routine maintenance. For that you'll need a home healthcare service or move your mom to an assisted living. I'm actually surprised that your local hospice accepted your mother as a patient if she's still well enough to tolerate and benefit from CT scans and subsequent treatment. Admittance to hospice service usually requires signs of "failure to thrive" with a terminal illness or simply old age. Hospice plays an essential role in the care of anyone at the end of life or facing the endstage of illness. The goal of hospice is to keep a person as comfortable as possible, free from being poked, prodded or unnecessarily moved. There comes a point in the progression of decline where the "cure" is worse than the symptoms. Many of the tests and medications we use routinely in healthcare can have devastating effects on the frail and seriously demented; the disease might be uncomfortable, but the tests may actually kill you. Hospice is also focused on the dignity of the individual and respecting that person's wishes. Almost all of us want to die in our own beds and free of tubes and uncomfortable breathing apparatus. That's the purpose of hospice and they are Wonderful at what they do, so when that day arrives for your mom, call them back. I suggest you visit the websites of the national hospice associations for more information. PS I'm glad you called them in early (albeit a little too early.) Most people wait too long and thus deprive their loved ones of physical comfort and a peaceful natural death.