Updated: Aug 27, 2019
I have had a great deal of confusion in my life about a great many things: calculus, non-alcoholic beer, how the movie Pootie Tang never won an Oscar, and why it's just called "necking" and not "the warm fuzzy-tingle times" (a way more accurate description).
Hospice is also on my list of Most Baffling because I've had very limited experience with death. My hospice assumptions were based on friends and family's hearsay, and I swear I heard them say hospice services were 24/7 - sitting with the terminally ill person, and giving comfort to both the living and soon to be not-living.
So, you can imagine my shock when they sent my dying father home from the hospital, and I found out 24/7 hospice care was not on the table. They seemed astounded that I'd thought it a possibility. Apparently there are continuous care options in crisis situations but Dad's death did not warrant that.
I guess it only counts when the dying person is in crisis - when his dementia wife, two daughters, two grandsons, and The Boyfriend in the Basement are in crisis, nope, hospice don't stay.
Instead, they gave us three different comfort-measures medications, showed us how to roll Dad from side-to-side to change bedding, popped a catheter in him and said they'd be back in a couple days. Dad died within hours.
I've been befuddled about hospice ever since.
Three back-to-the-future years later, Mom's doctor believes it is now time for hospice to step in. Dr. Monica made the referral, Nurse Apple (yeah, that's her name) showed up on our doorstep a week later, and she and I had a nice chat about an unpleasant topic, with only a few tears shed.
I thought I'd share what I've found out so far in case any of you are perplexed on the whole hospice thing too.
What Hospice Is
Hospice is end-of-life-quality care, not curative care. Meaning the patient will no longer receive curative measures for a terminal condition, only comfort measures until they die.
The most common hospice is in-home care. Hospice is also provided in hospitals, memory cares, hospice live-in centers, and a variety of other long-term care facilities.
How Hospice is Accessed/Works
Hospice is accessed through a physician referral. Physicians refer people to hospice when they believe the patient likely has 6-months (or less) life to be lived.
Hospice receives the referral and then does an Admission Evaluation Meeting with the patient before acceptance into Hospice is finalized. I requested an initial Informational Meeting, so I could ask all my questions without Mom around, and they graciously complied.
If the patient has not died at the end of the 6-months the Wicked Witch of the West swoops down to their bedside, flips over an hourglass, and cackles fiendishly while flying monkeys jump up and down on the patient's chest. KIDDING! Only kidding! Just wanted to see if you're paying attention. Let's try that again...
If the patient has not died at the end of the 6-months the hospice team will evaluate the patient and determine if hospice should be renewed at that time, or quit hospice service with the option of returning later as the patient moves closer to end-of-life. Nurse Apple assured me no one dresses up like the Wicked Witch to hasten the hereafter, even if you beg and plead super a lot. <sigh>
Hospice is paid for by Medicare (requirement: Medicare Part A).
Once Hospice is Approved
Hospice is now the go-to for all medical and prescription services for the patient.
The patient's previous doctors are kept in the loop as part of the Hospice Team for that patient, but no more doctor's appointments and such.
If there is a medical event the family caregiver is to notify their hospice people first, then hospice will call 911 if appropriate, or walk the family caregiver through the event by phone, or send a hospice nurse to assess the situation. If the family caregiver calls 911 first, they should notify their hospice people as soon as possible. This is because an emergency visit could accidentally knock a patient off of hospice (some administrative backroom dealings that the hospice team knows how to side-step when they have prior knowledge that an emergency room visit is imminent).
What Hospice Does
The Hospice Team consists of/and does the following:
* A hospice physician who will oversee the patient's care, but rarely attends the patient in person.
* A hospice nurse who will visit the home a minimum of once every two weeks, and increase visits if there is need.
* A social worker who can assess in-home needs for safety, and help with any additional resources.
* A bath aide (also called a home health care aide) who will make a maximum of two visits per week. They offer services such as bathing, nail care, massage. (This is what excites me the most! Somebody who's job it is to bathe The Beast! )
"Hmmm, bath aide. There's only one of you? Well, okay then, we got you some riot gear, we'll notify your next of kin. Now get in there and shower her!"
* A respite volunteer is available for up to four hours a week to provide companionship to the patient, and a break to the family caregiver.
* A non-denominational chaplain available for comfort services.
Team members may rotate, like you may not have the same nurse or respite volunteer visit each time.
And that's all I know so far, but I already feel 100 times smarter about hospice then I did prior to meeting Nurse Apple! I won't be any further enlightened until after our scheduled Admission Evaluation next week.
In the meantime I'll keep pondering more mysteries of the universe like why isn't there a Silly String theory? That would be a lot more fun.
P.S. For more info on Hospice check out Medicare.gov's Hospice page. Pretty dry reading (not near as entertaining as this), but informative just the same.