Just a quick post before I go to do my part in the health care system.

I wrote about practices I saw, and obeyed god help me, in nursing homes in the mid 1980’s. What I saw convinced me of the importance of respecting patient’s wishes as to how much, or little, intervention they want at end of life. Outcomes routinely defy doctor’s predictions, and the one who will take the consequences of decisions made is the patient. It is their right to call the shots.

Simultaneous with the rise of Hospice care and advance directives is a recognition that patients in nursing homes have a right to a good quality of life and maximum independence.

Nursing homes have changed greatly. The work culture is much more patient-centered. No one is physically restrained unless there is a doctor’s order and within strict regulations, and this is done for as short a time as possible.

People fall more. But they walk more–it’s better overall.

Force-feeding is not done, although there’s still pressure to make sure the patient eats. The last nursing home I worked in was making mealtimes more flexible so that a patient who would only eat a few bites at a time could snack all day and get enough calories in on their own schedule. I think that the improvement will continue, because patients and families demand it.

The most disabling condition, in my opinion, is dementia. There are people living at home who are quadriplegic, who have unstable diabetes, who have feeding tubes, who can’t speak. It’s amazing how well some people can manage on their own with a Lifeline, a few hours of nurses aid care, RIDE and Meals on Wheels. Some people with major physical disabilities opt to stay home, fight to stay home, and manage.

But when a person wanders outside barefoot in the winter, when they leave the stove on and set fires, when they forget to eat and drink they need 24 hour supervision. Families try, friends try. A nursing home has 3 crews on 8 hour shifts and you can bet they are running their legs off on all 3. Even the most loving, stay at home daughter has to sleep sometime. Families sometimes have to seek a good, caring nursing home.

The key is good and caring. There are many good ones, and let me tell you, complaining works. I’m not saying families should rag on the staff, but stay involved. They’ll be a note in the chart, nurse code ‘family very concerned’. But that’s how it should be.