My mother has advanced Parkinson’s and dementia. She was placed into a skilled nursing memory care unit at the end of December. I am trying to understand the difference between hospice and palliative care. Her incontinence has gotten worse she’s pretty mobile but balance is awful. She has about 2 to 3 falls a week. Some days she can feed herself some days she can’t. Her speech is slurred and she talks a bunch of nonsense due to the dementia. Since she’s already in a home, I’m not sure how hospice works in conjunction to the memory care facility and staff.
Can anyone educate me or explain in simple terms? I am wondering if I need to ask her doctor. I don’t know if I should even bring it up and I don’t necessarily think more medication needs to be added to her plate if that’s what hospice does.
It is confusing. I’ve given some examples that might help.
My aunt with Parkinson’s and dementia recently passed away. She was at home but had been on home hospice for several years. With hospice she was able to have a CNA, nurse, medical equipment and supplies that she did not have before. For over a year her daughter had to spoon feed her. The hands on care she received was in the form of a bath and a nurse visit on a schedule. Medicare paid for this service provided by a home hospice company. It was a real blessing that she was on hospice when COVID hit her household of five. They had oxygen on hand and the hospice team help guide them through some tough times (although they stopped the visits for the duration.) My uncle went on hospice during that same time with the same company. He had to be hospitalized twice. He would go off hospice and right back on when he was discharged from the hospital. All it took was a phone call.
My DH aunt is in a facility (not a hospice center) and is bedfast. She is on home hospice now for over two years due to her dementia. Her hospice agency CNA sees her daily for a bath, the hospice provides her dementia meds (that she was already on) and has the hospice nurse visit weekly, all under the oversight of the hospice doctor. Hospice will go wherever the patient is. She had this same hospice agency at home before going to the facility. I am able to seek medical care for aunt whenever she needs it and not risk her coming off of home hospice care provided by the agency … as long as the additional care is not for the dementia. Medicare pays for the hospice portion of her care while at the facility.
There are hospice centers where a patient may go when they are actively dying.
A third aunt of mine was in a hospice center after coming off dialysis. they are tended by staff onsite.
My mom was in a hospital for several days, then was in rehab in the same hospital. While in rehab she developed aspiration pneumonia. She was placed on palliative care. It was clear she was not going to survive. My impression was that she was placed on palliative care instead of hospice for billing purposes. Medicare and her insurance paid for her hospital/rehab/palliative care. I could see no difference in the palliative care services vs hospice care services except that the hospital provided the palliative care, no outside hospice agency came in. She was moved from ICU to a private room where she could be with family. This felt much like the hospice center my third aunt had been in but this was presented as palliative care.
My MIL was in a small hospital on hospice care. She had dementia but was actively dying from cancer. The hospital staff provided the hospice care. Why one hospital called it hospice and another palliative is unclear to me.
From the web.
Palliative care is specialized medical care focused on relieving the symptoms and stress of a serious illness. It is appropriate at any age and at any stage, and you can have it along with curative treatment. The goal is to improve your quality of life. It is not just for the dying.
Hospice care is end-of-life care. A team of health care professionals and volunteers provides it. They give medical, psychological, and spiritual support. The goal of the care is to help people who are dying have peace, comfort, and dignity. The caregivers try to control pain and other symptoms so a person can remain as alert and comfortable as possible. Hospice programs also provide services to support a patient's family.
Usually, a hospice patient is expected to live 6 months or less. Hospice care can take place:
At home
At a hospice center
In a hospital
In a facility
Disclaimer - I did not author the above information.
In the USA, Palliative Care is not necessarily very different, but more medical treatment may be OK. What is provided and who pays can be different, too .
Outside the USA, the terms can be used interchangeably, or can have different uses. There is no accepted ‘dictionary’ meaning. Where I am, Palliative Care is the only term used for terminal comfort care. In many countries, Hospice is a very different old term for long term care provided by religious bodies (usually in convents) for invalids and orphans. Wide reading on the net can lead to considerable confusion!
It’s best to ask the right agency in your own state, so that everyone is looking at the same rules.
So if admitted, they would have been provided fluids, all measures of comfort care, even xrays if needed, but not things like chemo or radiation.
The things you describe about Mom are common with people who suffer from Parkinsons. Is she ready for hospice, probably not. But, you can talk to the DON and ask what she thinks.
As a practical matter, Medicaid-funded hospices in the USA receive a flat-rate reimbursement and would not be able to provide care to extend life (nor are they expected to).
As you probably know, the primary eligability criterion for hospice is a life expectancy of six months or less. Because of this, and because the focus is on end-of-life comfort, hospice care will often drastically reduce the number of drugs a patient is taking as many of these typically offer little or no benefit to those with such a short life expectancy.
Hospices are sometimes criticized for relying too much on Ativan (an anti-anxiety drug) and morphine (which remains the go-to for severe physical pain).
You certainly could schedule time with her physician(s) (or others on her care team) to see what options are available, and assess the pros and cons of each.
Hospice will work with the facility to coordinate services. Typically a hospice physician will become her primary physician but hospice can't and won't provide more than occasional drop-in services; the facility will remain responsible for her daily care.