Our Team met a nurse who does occupational nursing on a national network TV station and when speaking to her, Rachel voiced that her passion and purpose was to let the world know the importance of end of life care. We chose to support her by writing this blog.
[i] A recent article this summer discussed that feeding tubes for dementia patients are not as prevalent as before (5% less use) and do not apparently facilitate either comfort or long life. A doctor for Aging Research at Harvard University underscored that care is not terminated just because a feeding tube might be.
End of life care is not cure, but rather daily focused treatment that maximize comfort and quality of life.
Rachel told us that many people still don’t know this and that they have a certain point of view about end of life care. Her face broke and she welled up with tears when speaking with us.
She said, “I have seen everything, every kind of death, and there is a way--an easy way really, that gives the patient: comfort, last requests for what is important to them and completion—so that they can die in peace and comfort and love”. She went on, “it is really available to everyone and it does not have to be awful the way I have witnessed it so many times”.
“It is actually quite simple to give someone what they want like to see a garden or to hear the voice of their grandson or to hold someones hand”. "For those who know they are dying, last requests are usually simple to provide".
The Mayo Clinic[ii] speaks more about end of life care for people with terminal illness. That hospice care is for people who are nearing the end of life, within six months usually. There are services provided which are solely to maximize comfort by “reducing pain and addressing the physical, psychological, social and spiritual needs” of the individual and the family too. For families, hospice “provides counseling, respite care for the exhausted caregiver and practical support”
It is the phrase “care over cure”, that has represented this end of life, intervention process.
Hospice care is in effect for a patient as long as the medical team says that the condition is life-limiting.
Types of hospice patients include those with:
- Heart disease
- Kidney failure
- And COPD.
It is said that patients on hospice care do better, live better and they live longer.
The burden from the family is eased and hospice prepares the family for grief.
Giving the family or caregiving member a respite is under-emphasized, but very important--someone on our team was told once, you can die too--take care of yourself too!
Hospice is often provided at home (58%), in private residence (35%), nursing homes (14.5%), hospice inpatient facility (31.8%) and acute care hospital (9.3%) as if 2914[iii]. Sometimes a center geared to this, a hospital or nursing home area is designated. More than half of hospice patients are women and 41.1% of all patients are 85+.
The Team for hospice and palliative care includes many professionals who work directly with the family member or primary caregiver making decisions for the terminally ill individual. Visits by staff are made regularly and the hospice staff is usually available 24/7. The team includes:
- Social workers
- Bereavement therapists
- Spiritual leaders
- Physical (lung, etc.), occupational and speech therapists
According to Mayo Clinic, payment is often based on need instead of the ability to pay and Medicare, Medicaid and Department of Veterans Affairs and private insurance pay for hospice care.
Some questions Mayo Clinic suggests might be useful when looking into the program available include:
- Who is the team and is the medical director "palliative and hospice care certified”
- Is the program Medicare certified and licensed by the state, etc?
- Is the program for profit?
- Is the pharmacist on call?
- What is the afterhours protocol if you need help?
- What nursing homes and such are connected with the program?
Transition of life is sad, but it does not have to be unbearable. There are structures in place for support. There is science to back up such choices.Read More