hospice questions

[ultracyclist]

My mom is being moved into hospice care. The complications due to many pneumonias, dementia, and COPD are overwelming her.

My sister and I are having a meeting with the hospice representatives late tomorrow or Friday.

Do any of you have experience in these matters? What questions should I be asking?

I have been doing a bit of research online.

 

[john1691]

What is the percentage of temps to fulltime nursing staff? What is the percentage of RN's/LPN's/nurses aids? How long have most staff members been employed there? What do they see as their role? Do they spend time in patient rooms talking, reading or just do quick checks for vitals and leave the TV on?

People who are good at hospice care are rare. It is a difficult job, and turnover is common. Long term employment says a lot about both the care giver and the facility. Of course, ask for refferances.

 

[SNC1923]

Who is their governing body? How can you investigate number of complaints/official involvement?

Generally, places like hospice are really dedicated to quality of life matters and providing excellent care, but this is, of course, not always the case. Keep a good eye on your Mom and establish and maintain relationships with her direct caregivers.

Good luck and keep us posted.

 

[RIK]

What is the percentage of temps to fulltime nursing staff? What is the percentage of RN's/LPN's/nurses aids? How long have most staff members been employed there? What do they see as their role? Do they spend time in patient rooms talking, reading or just do quick checks for vitals and leave the TV on?

People who are good at hospice care are rare. It is a difficult job, and turnover is common. Long term employment says a lot about both the care giver and the facility. Of course, ask for refferances.

Also, is it an Hospice Care Center, Palative Care Center, Hospital operated center or private nursing home where hospice care nurses visit and attend to the patients who have contracted to their company. References very important.
My wife and I decided to be the primary caregivers to her Mom with nurses visiting at the house.Very tough job. We have a lot of respect for Hospice nurses. Hospice is also extended to family members to help cope with personal feelings that come into play. And as we found out they are with you at the end and beyond to help.
I Know what you're going through. If you need to ask more, don't hesitate.

 

[plastx]

I had a very unfortunate situation with my late father and a relatively new hospice. A word of warning here: Most hospice patients, in my opinion, are cancer patients. That is what they are geared up for. Cancer patients are often in pain, and they get medicated appropriately with narcotics... as much as they need, without worrying to much about side effects or narcotic dependence.

That is fundamentally different than a COPD patient. Narcotics can kill a COPD patient in very short order. Be very careful....hospice nurses reach for narcotics at the drop of a pin.

I should know. I am a physician myself, a surgeon. My father had end stage COPD, and his physicians said they had nothing more to offer, and suggested a hospice. My wife and I checked out the new facility... sure looked great. He was transferred from the hospital to the hospice via ambulance. He wasn't there more than an hour before a nurse gave him a hefty dose of morphine...(before we could arrive) ostensibly because "he was having such a hard time breathing."
However, he had only been that way for the last twenty years.... a hospice nurse sees difficulty breathing, and they think pain and discomfort, and they reach for the narcotics. It knocked the bejeezus out of my father, and by the time I got there, I felt the die was cast. Although he regained some consciousness and could respond, he never cleared his secretions, and he passed away within 18 hours... and long enough to refuse any more narcotics. I feel they likely shortened his life days to weeks. This was just this last August.

I haven't been of the mind to do anything about it, but I did ask the medical director to look into it with an eye to educating the staff. I know it's just my experience, but I would not put a loved one in a hospice again unless they had terminal cancer.

I wish you the best in the road ahead...may God be with you during this time.

 

[ultracyclist]

Thank you for your help

Both of my parents are recovering from pneumonia in a convalescent/rehab facility. There is hospice care in the facility both in a separate wing and also avaialble in the "room".

My father will be discharged in about a week-assuming that he does not try to re-arrange the furniture with his head again.

My mom is never leaving. Her COPD is suffocating her and the dementia is placing her in a different reality. Her O2 level was down to 80% on 2 liters, and they have cranked it up to 4-she is at about 90% which for her is great.

But she is so weak that her swallowing is affected, and the MD's have indicated upper lobe aspiration pneumonia (again). She no longer has the strength to cough.

We are not doing the feeding tubes. Nor are we cracking her chest open if she codes. We have already executed powers of attorney and the staff understands the DNR.

 

[dbrick]

My father died in July 07, age 92, and received Hospice care in his home during his last month.

It was wonderful. The nurses and health aides who came to the house were kind and knowledgeable; on the two occasions when I called on the telephone, the operator was likewise, and immediately had or obtained the information I needed.

I have no experience with a Hospice venue, but can imagine that plastix's experience is certainly possible: what I saw was end-of-life palliative care, and wouldn't a bit more morphine help? In my Dad's case, it was entirely appropriate ('tho I had a low-level wrestle with my stepmom, who was reluctant to medicate him I think from a deep denial that he was dying. She eventually came around to my POV.) I have heard of less-than-stellar experiences with other Hospice organizations; the one here in Santa Cruz has an excellent reputation - quite deserved, in my view.

 

[RIK]

We are not doing the feeding tubes. Nor are we cracking her chest open if she codes. We have already executed powers of attorney and the staff understands the DNR.

You are at the juncture my wife, I and her siblings were 10 weeks ago. The doctor also recomended we turn off her Mom's pacemaker. Don't know if that is relevent to you.

 

[carter]

Ultracyclist..My mother is 86. Just yesterday my brother, sister and I had a group conference with her physician. After several hospitalizations for congestive heart failure, pneumonia, and a viral bronchial infection, her Doc informed us that she had a form of COPD and was in a terminal phase, and suggested Hospice at some time in the near future. Just tonight when I left her at her nursing home facility she had just had another chest x-ray for suspected pneumonia with a rattle and wheeze in her labored breathing, and may be hospitalized again tomorrow. We haven't decided about Hospice for our mother at this point. Her Doctor did tell us that with Hospice she would not be hospitalized for treatment, but would be treated where she resides. I don't know that we as a family are ready for that absence of hospital care yet. Her Doctor says that with further hospitalizations she becomes weaker, and experiences the risk of catching something else in patient.. they are over run with Flu. It is a hard decision, and such a hard time of life for our parents. I don't think I really understood aging until watching my Mother's experience and others that I have come to know in her nursing home. Our aging parents have so much grace and courage. And as I am sure you know, even in the best of facilities or with the best of services, you have to be there and watch, and advocate daily for the their care and comfort. My best to you and your family during this time.

 

[dancogan]

Our best to you and your family during such a difficult time. Seeing our parents age is hard, and brings home our own mortality. But to be surrounded by family at such a time is probably what your mother needs most.

 

[wuli959]

Just remember that the hospice is there to ease the transition for the patient and family for their death.

Think of it as sort of a mid-wife in reverse. From easing birth process to easing the death process.

They are not there to do further diagnostic or take extraordinary steps to prolong life. If your family would want type of intervention than the patient should be in a hospital and not hospice.

This is a difficult process for most families, it was for ours. Our thoughts will be with you.

 

[BOXERR]

While not being in this position myself, I know a lot of people in my town who have older family who have had to be placed in towns away from ours, as there is not enough facilities here.

This puts added strain on people having to travel sometimes reasonable distance to visit family members.

The problem will only get worse as medical intervention keeps us alive longer.
I know, I am one.