Hospice
Hospice
Click here to return to End-of-Life Story.
I would like to add one observation that I have been a part of re: doctors and hospice.
I used to work for the American Cancer Society and organized professional Ed programs for continuing education.
At one of our sessions for nurses.....one of the oncologists on a panel was asked why he would not treat a patient in hospice, but rather if the patient/family decided to go into hospice....that patient would be referred to another oncologist for his/her remaining care.
The doctor's response was enlightening to all of us at the meeting: He could not mentally/emotionally continue to switch between hospice(palliative) care and aggressive treatment for other patients. He found this too difficult to deal with himself. It was not that he objected to patients going into hospice.....it was simply, he could not handle the zigzag emotions throughout the day/week.
Since this time, I have even wondered if some neurologists were not able to handle this switch between chronically ill (PD, MS, etc.) patients vs. stroke/accident patients who may recover.
For those of you who are on the borderline of decision making....tomorrow or next year......perhaps you should ask your physician if he is able to deal with hospice decisions/care or if he will suggest that you change physicians (perhaps seeing one of his/her partners in practice at this time).
My prayers and thoughts are with all of you as you deal with the ongoing decisions and movement through the final stages of life. We are pleased with our current hospice type of care for my mother in the nursing home.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Everything you said about hospice was true for our hospice here
in south Georgia. My husband was under hospice care for 3 years. We
got out once for a short time. His work insurance paid for about
6 months then Medicare paid. I was always afraid he would live
loner than they could help but they assured me every time that they
didn't work that way. The hospice nurses were understanding
instead of always making me feel I should call the Dr. for every
little cough or sniffle. Other nurses had insisting I should get
him up everyday force food and drink. Then force the BM.
I took my husband of all PD meds nearly 2 years before he passed
away. He was only taking clozeral and Klonopin which seemed
to relieve the pain and agitation. He probably had DLBD. Ten
days before he died my daughters and I convinced the hospice
nurse that my husband was unaware of what was going on, unable to
respond or react in any way, and seemed to us to be very
uncomfortable. We gave him one teaspoon of morphine every
4 hours from noon on Sunday until he passed on and left that
restrictive PD body behind on Friday the 21 of July.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here's yet another hospice advantage! They are great at contacting out-of-town relatives for you, and helping the out-of-towners understand what's going on.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
One day we are ready for Hospice and
the next it doesn't seem time yet. I do have the answers to some of your
questions though since I had them come and talk to me. The doctor has to
certify that in his opinion the patient will not live more than six months,
BUT. That does not mean the patient must die in that time. Evidently they
certify for 90 days at a time, and it can be renewed three times. According
to our local VNA, you can go off it at any time if the patient improves, and
the one period you want to avoid committing to the fourth one unless death is
very imminent. They provide all kinds of Home help that is not available
through regular Medicare including medications. I, however, have full-time
help that I pay for as well as prescription coverage through our supplement.
At the present time, we are getting in-home nursing help when needed through
regular Medicare, and we don't need much else. They do not treat
aggressively, but they do treat pain aggressively. my husband is in no pain right
now and may not be, so the main help we would get from Hospice would be at
the very end. We already have what they might offer now, and even though I
pay for it, I am not about to let it go. I mainly want to be sure that
Hospice is involved when my husband actually dies because they make that transition
so much easier. I know that SDS patients often die suddenly with no real
warning, and if that happens here, so be it, but otherwise, I am waiting to
see how he does on the antibiotic to involve them anymore. As with any new
government service, I have the feeling I will be turning over some of the
control of what we do. Where your mother is concerned, if the Doctor will say
she has six months, and you think they will be able to provide some services
you cannot afford on your own, I would talk to them. Your do not HAVE to die
within six months to qualify for Hospice: you just have to have a poor
prognosis for living a long time
and not want any heroic attempts at prolonging life. At least that is what I
got out of my interview and watching Bill Moyers series on PBS.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
As you know, we have been grappling with the same issues as you about
allowing Hospice to take over except that our Neurologist is very familiar
with them and has no problem certifying My husband even is he lives another two
years. As of last Friday, they are officially in charge of My husband's care. His
most recent UTI is gone, and he is not that much improved. We are ready to
let go and let God take over( as if He weren't in charge all along). It was
explained to me that there are four periods that must be certified, each 90
days except the last one. You can withdraw at any time except during the last
period which is of indefinite time. All the doctor has to say is that the
patient has a terminal illness and will probably die within six months. My husband
has always beaten the odds with this the progression timetable, but he is
certainly in the last stage according to all charts, and he definitely will
not recover although he may have better times. The Hospice nurse will arrange
for extra help with bathing as we need it, and she will check on him three
times a week, but she is available every day if needed. As I understand it,
pain management is one of their main benefits although My husband does not need it
at present. Also, Hospice will provide all medications and other supplies we
may need. The group we are using is VNA since our doctor is used to them, and
from now on the nurse will be talking to the doctors and we will not have to
see the doctor unless My husband develops something unrelated to the diagnosis he
came in under. I assume Hospice programs are similar across the country, but
they are not exactly alike I believe.
This was a harder decision than I had anticipated even though we have
always known My husband would not recover. Having finally made the decision, I find
myself much more relaxed than usual. The nurse assured me that if he doesn't
want to take his pills or eat or even get up in his chair, it is not
necessary. She kept repeating to do whatever was comfortable for him and not
push. I knew this, but her repeating it every time she comes will be very
helpful. Somehow, we all feel that when they go downhill, we are somewhat at
fault and we should be doing more to keep them going. Our attitude of just
doing what My husband seems to want has already made him act more comfortable. He
can no longer talk much, but he just seems more at ease.
I hope that your doctor can let go himself enough to make the
referral for you. Perhaps you could get the reassurance from your local
Hospice that he does not have to guarantee death in six months, just state
that it is probable.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
When my wife was hospitalized over 2 months ago, the primary doc told
me to contact hospice, but the neuro said that she was far from there. So,
we did give her the benefit of the doubt, and we did put a G tube in her
stomach, and we sent her to a rehab facility. After several weeks of
attempted therapy, we brought her home to be attended by Hospice. We
canceled an appointment with the neuro last week and surprisingly we have
not heard from her. My wife has not had a single life sustaining meal since
she was taken to the hospital although she was nourished via the tube while
in rehab. We (our children and I) are tending to her needs round the clock
now.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thank you! It is so wonderful to be able to bring up a concern here and
get so much supportive help. I have read each of the posts about hospice
and very much appreciate all the info, including the great web site and
will definitely follow through on the suggestions. Not only do we get
good info, but you know it is always heartfelt and spoken from experience.
I will see how things progress for the next couple of weeks here with the
home health care agency and the additional support they seem to think they
can provide. I'm sure we will use hospice eventually and maybe I was
jumping a little too soon because of all the changes going on with the home
health care staff and my mother taking another step downwards.
Sometimes I feel like we have a pretty good stable routine going,
(including recognizing the end is coming), then all of a sudden a number of
changes take place (mom's patterns, caregiver schedules, insurance issues)
and everything gets revved up again requiring numerous phone calls to
health care agency, insurance issues family discussions, doctor
conversations, etc. etc.. Today I'm taking a deep breath, relaxing and
reminding myself to "chill out" a bit and take each day as it comes and not
get too anxious about working out all the details---and it is working.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thanks for all the responses to my post. I am beginning to wonder if I
made a mistake to call in hospice. It hasn't gone good so far:
- Asked 4 nurses, thursday, friday, monday and wednesday for pain meds
for Mom. Each one witnessed pain Mom was in, was giving tylenol but not
helping. Each one told me they would contact doctor for me NOT to do
it. Finally had to call hospice and raise hell and got pain meds on
late wednesday.
- Asked for a firmer mattress, I think soft one is causing Mom back
pain. They tell me they will have new mattress out to me "today"
(wednesday). I call about 7pm and ask, where is mattress? Get on-call
people, mattress "may" come tonight sometime. Decide Mom needs to go to
bed, to heck with mattress, call back to tell them, say I have to take
mattress tonight. I tell them no, told me that otherwise I have to be
ready for mattress to go on bed at 8 AM. I said okay. Set alarm and
have Mom and Dad out of bed before 8 AM, 10:00 no mattress!! Call
again, mattress arrives at 10:30. Won't take the other one, belongs to
a different company, it is on the porch. During this toodoo over the
mattress, I get implication by three people that I wanted mattress over
other people getting their oxygen. Of course not, but no one told me to
expect any change and I had to make Mom uncomfortable both times. Last
time that happens, I get mad and tell them no one else better mention
oxygen again, just let me know what is happening because this isn't
helping Mom any.
Right now I don't have very many good feelings about hospice people,
they haven't followed through on ONE thing they have promised. I know
things happen, but this is what they are supposed to be doing. I also
told them that "I'm sorry" doesn't work any more. Don't make promises
they can't keep, and keep me informed! They have all admitted that none
of it should have happened, but I feel like I have to have some things
go right before I use any of the respite care. One of the nurses has
suggested that I am too upset and need respite care now. I reminded her
that I was upset over hospice, that the respite I need is for them to do
right by Mom. They have offered to come once a day Monday-Friday to
give her a bath and I accepted. They keep telling me that these things
never happen, but they sure happened this time. They are supposed to be
providing pain relief and comfort to Mom and respite to me and nothing
has happened without a fight. I am most angry about them not getting
something for Mom's pain for so long!! The pastor came out and said:
Pain relief is what we do best!! I said show me!!
Believe it or not, I have cooled down about this, you wouldn't have
wanted me to write this a day or two ago!!
Mom does seem a little better, a little more comfortable. Still not
eating good and sleeping a lot, or in a stupor (eyes open but not
focusing). She looks like she has lost lots of weight and sometimes she
is so out of it I wonder if this is it.
Anyhow, I will give them this next week. If nothing goes wrong I will
try for a weekend of respite care and get out of here all by myself,
maybe to the beach. I even need to get away from my husband and Dad and
work through losing Mom all by myself. Then we will go from there.
Return to Index
Return to Alphabetical Contents
Return to Home Health/Hospice Issues
