Inkwell: Authors and Artists

    
Though hospice is supposed to neither hasten death nor prolong life, it
gives family members a fair amount of autonomy about how much morphine to
give for comfort, even though high doses can depress breathing and will
hasten death.  Nobody ever says "Here, use a LOT" -- but the understanding
is there.

A number of hospices, under pilot programs with the Centers for Medicare and
Medicaid Services, are experimenting with concurrent enrollment -- giving
patients the support and comfort of hospice while they still get those
medical treatments that improve quality of life and may extend life.  This
may be the future.

But it's always part of palliative care that things that improve comfort are
OK.  i.e. A hospice patient may opt for radiation to shrink a tumor if that
reduces pain.  Not to cure, because there's no cure, but to enhance comfort.
That should be available to any hospice patient and families should fight
for it if it's not.

However, as many have said above, hospices are different.  It's not an
infallible guide, but I'd always look into a nonprofit first. The basic
services provided, under Medicare, are supposedly the same but nonprofits
provide additional services.  And the cultures may be dissimilar.
(But I think Ren works for a for-profit hospice and it does a fine job, so
as I said, not an infallible guide.)
  

    
Yes, I work for a for-profit.  It wasn't a philosophical choice, it
was the offer I got.  But, as I believe I said up above, it turns
out that we provide more services than the local non-profits.

To address some of the concerns voiced above:

We have had patients with cancer who take chemo and receive
radiation if the goal is palliation.

I'm currently talking with a patient about death with dignity, have
explained the process and told her that I'll support her if that's
her decision.  I was a hospice chaplain in Oregon and one of our
patients did choose physician assisted suicide.

Hospice covers all treatments and medications that relate to the
terminal diagnosis.  If a patient has other conditions, they can
continue to take drugs and receive treatments and Medicare will pay
for them separately.  I've heard the docs and RNs go over patients'
med lists and discontinue stuff like cranberry pills and Calcium and
even cholesterol-lowering drugs when patients are admitted, and then
I think when death is near all meds are discontinued except those
essential for comfort such as morphine and ativan.  The drug
decisions key off the doc of the patient's choice; sometimes this is
the original primary care physician or cardiologist, and sometimes
they choose to use the hospice doctor.

As for housing:

Yes in San Francisco there's Zen Hospice with their Victorian in
Hayes Valley and also the ward in Laguna Honda that they run.  It is
my understanding that patients in the Victorian known as Zen Hospice
have to pay room and board and then hospice services are free
(covered by Medicare) on top of that.  

Our patients who remain in private homes may get so sick that they
need full time caregivers, and if family can't provide the care for
one reason or other those patients will usually go to a bed in a
Skilled Nursing Facility.  I believe I've heard that the cost of a
bed in a nice SNF and staying at home with 24/7 caregivers is about
a wash.  

Many of our people live in Assisted Living or Independent Living
facilities and we visit and provide care so their monthly living
costs remain the same.  

Very poor people who are very sick will be in a Medi/Medi bed
(Medicare plus Medical) in a Skilled Nursing Facility.  The ladies
playing the harp and the nurses giving daily backrubs don't work in
these SNFs, but the patients do have safety and care in their final
days.  I recently had a patient who had been living in a hole in the
wall -- a literal hole in a literal wall -- for four years until he
went to the ER of a local hospital because of pain and learned that
he had a stage 4 cancer.  He was glad to have a clean bed and people
to visit with him while he died.

I'm sorry to read that so many of you have had bad experiences with
hospices.  
  

    
Ren, thanks for input from you actual experience. I consider it
authoritative and helpful.

Paula, concurrent enrollment must be understood more and pushed
harder. I'm sure I'll see more of that in future columns from you.

While I have not been right up close to hospice care, I have had
many friends die over the years in hospice and everyone's account in
every single case was very positive.

This has already been a great conversation because I've learned what
ought to be obvious: it's a great concept but investigation and
research about the best way to implement it makes perfect sense.
  

    

i want to advocate for a hospice benefit that many folks dont know about:
grief support. different hospices offer it in different ways (sometimes with
groups, sometimes with individual grief counselors) --- but the thing is,
bereavement services dont need to be local. that is, for example, when my
sister died in southern california, hospice of santa cruz offered great
grief support. this was a service the organization offered to the community,
not just for the intimates of patients who had been enrolled hospice
clients.

another friend did something similar in santa barbara; her father died in
the bay area and she was able to take great advantage of grief support of
the hospice of santa barbara.
  

    
Hospice is just about the only part of our irrational health care system
where the so-called "unit of care" is the family, not just the individual.

Think about it: Even in childbirth, there's a doctor for the pregnant and
then laboring woman, the ob-gyn. And a separate doctor for the baby, the
pediatrician. (The father is on his own.)

But hospice cares for the dying person and the family. It makes sense: Given
the way the benefit is structured, if the family caregivers can't cope, the
whole effort fails. (True of eldercare for the not-dying, too.) So the
staffers keep an eye on family members, ask after their well-being. There's
a social worker who can help family cope with their stresses and losses,
help them find other services they need, help them with paperwork.
Bereavement support after the death.  It's one of several aspects of hospice
that really should be integrated into the rest of the health care system.
If you even want to call it a system.
  

    

Just catching up with this great topic. My father-in-law was in hospice
care in our home after a diagnosis of pancreatic cancer. Our ability to
call someone at 3am to ask for advice was literally priceless.

Of course any system with human beings in it is subject to problems. But
we found that the people we dealt with truly cared about what they were
doing. I found being with him as he was dying a truly moving experience
and one of the highlights of my life. The support we received so that
was possible is something I won't forget.
  

    
Thanks for that, Jerry.  I'm so glad you had a good hospice
experience, and so glad that you know that we hospice workers are
only human and each and every one of us is doing the best we can.
  

    
I've only had good experiences with hospice:  two aunts who died of
cancer, one of whom was able to stay at home until she died due to
the excellent support of hospice staff, and who went to an inpatient
hospice later than we might now have wished (30+ years ago we didn't
know any better); and as soon as we knew how bad my father's stroke
was, he went straight to an inpatient hospice a little closer to
home than the acute hospital where he was taken for evaluation after
the stroke.  I did not visit him there, as I'd already said my
goodbyes, but I heard only good things from family members who did. 
  

    
I arrived at the home of my dying friend today just after the
hospice nurse (a new one) had left from her visit, and the dying
person's wife said: "An angel just came." She meant not only the
help with practical things and some helpful information, she also
said she found herself hugely reassured by the things the nurse said
about how things were going. To have the perspective and knowledge
of someone familiar with the process, who has seen this many times
before, if you are taking care of someone dying at home, is a huge
gift.

The nurse who had come a couple days ago when I was there was
wonderful. This one must have been even better yet, from S's
response.

This may be one of those times when you might say hospice could have
been called in earlier--the service was started less than four weeks
ago. But they have been right there at the time they are needed
most, and have been more than invaluable--a true blessing. This only
works because there is S., there all the time to give the palliative
medications. But for such a circumstance, it truly has made possible
the kind of death both of them most wanted, if death had to come.
  

    
When my beloved mother-in-law died, hospice had only been called in
hours before. They brought in a hospital bed within a few hours
after being called, but she died in a recliner without ever getting
in the bed. She suffered from no specific illness and never suffered
from pain. At the age of 98, she truly passed away with her family
around her, and when she breathed her last it was not obvious. I
asked the hospice nurse, is she gone? She listened with her
stethoscope and said yes. The hospice nurse was kind and gentle and
professional. Was hospice "necessary" in our case? Maybe not, but we
appreciated her that night,
  

    
The purpose of hospice is to make it possible for someone to die in
comfort in their own home.  I'm glad it's working that way for T.
  

    

Comforting to read about, comforting to experience.
  

    

i want to be clear that i -revere- hospice and so admire the people who do
this work.

the 2nd hospice my mother was enrolled in (which i believe is the same for-
profit one <renshin> works for) was great: capable, competent,
communicative, respectful; didnt engage in sickly-sweet discourse or
euphemism; was totally great.

weirdly, the hospice which abandoned my friend over labor-day weekend was a
non-profit in boston.

the 1st (for-profit) hospice for my mother was awful in so many respects:
they engaged in upselling (pushing their own very-expensive upscale dementia
facility for my mother); and how my mother was kicked off hospice remains
perturbing. i realize dementia is a hard dx for medicare in terms of
certifiable decline: however she -was- losing weight and her cognitive
decline was accelerating. but i live in northern california and my mother
was in southern california: when they kicked my mother out of hospice it was
in the guise of a care conference that i had to fly down for; they took two
hours of indirection and phony-sympathy to get to the point. this could have
been dealt with in a phonecall (or maybe concall) and would have been so
much better if they had just been direct with me and spared me the travel
hassles and expense.

while my mother was enrolled in this bad 1st hospice, i was also having
fights with them about No Meds.

i was led to this bad 1st hospice because the medical director of the
longterm care facility where my mother was also held the job of medical
director of this hospice.

so as with everything else, caveat emptor.

i think some states only allow one hospice per county. we in calif are lucky
because we have choices...
  

    
I would love to reframe words like "abandoned" and "kicked off." 
I'm sure you understand.  

This is a weekend of heavy rain storms in Northern California.  I
was driving on 101 Saturday night and it was terrifying.  So when I
was on call last night and my company asked me to drive 15 miles to
collect a signature on a piece of paper - while we were having the
same kind of downpour that I'd found myself in the night before - I
declined.  My company at least doesn't require me to do anything
that's physically dangerous.  I thought of my nurses who were
urgently called to various patients, and then thought of the
patients because the nurses, too, will occasionally be unable to
answer a call for very good reasons.
  

    
<renshin>, not sure about yr request for verbiage change. as I said,
I revere all the amazing work hospice ppl do.

however, my friend in boston -was- abandoned for a long weekend as
her husband lay dying --- and he did die without any hospice support
avail because no one was available. that's nuts; what kind of
hospice handles its scheduling that way?

and yes, I did experience my mother being 'kicked off' hospice ---
in part it felt that way because that particular hospice org was so
slippery. I think if they had been less slimey
salesperson/inauthentic from the beginning and I hadn't been
ambushed by their fear of getting in trouble with medicare --- it
wouldn't have felt like being 'kicked off'.
  

    

let me contrast with a good hospice story: sunday afternoon of memorial day
weekend, 2010, a few days after my sister died suddenly, i called hospice of
santa cruz, wondering about grief support. there was someone answering the
phone, who immediately put me through to someone who spent 45 minutes with
me. this grief-support intern  became my grief counselor for many months.

this is the sort of humane service i would have expected from hospice.

as to why the boston hospice was so poorly run or why the 1st southern-calif
hospice was so awful --- all i can say is humans and human organizations
vary.

my pointing out good and bad experiences (either 1st or 2nd hand) is NOT an
attack on hospice in general or on you, <renshin>.
  

    
I don't think there are any laws limiting the number of hospices to one per
county or one per anything. But of course there are financial realities, so
rural and underpopulated areas will have fewer hospice options.

Jane's friend who has been in hospice care for a month -- that's not usually
what hospice people mean when they wish that families didn't wait until the
11th hour. They mean people who cannot face the fact that a beloved is
dying, or doctors who can't face that they cannot cure someone, or even the
patient him or herself who hasn't made peace with a terminal disease -- and
calls hospice two or three or even one day before death.

I'm glad it worked out OK anyway for Robin's mother in law, who apparently
didn't suffer from the last-minute call.

But there are so many folks who never access all the things a hospice can do
because even very dedicated staffers can't do much in two or three days to
support the family, tend to people's spiritual or psychological needs, help
arrange care and other resources, etc. At that point, all you can really do
is try to prevent pain, and that's crucial but only part of what we usually
mean by "a good death."

And I agree with Jim, above. One of the less-celebrated but probably most
reassuring thing hospice brings is that 24-hour phone service. Most families
have never been through a death close-up and don't know what's normal or
natural or how to respond to crises. Why would they? The ability to get an
experienced person on the phone in the wee hours is very important.
Otherwise, people would likely be taking their dying relatives to an
emergency room, which is probably the very last place any of them would want
to be.
  

    
my friend, who works in wash state for hospice, says in wash state
there is only one hospice per county. that's how it was a few yrs
back --- perhaps that has change
  

    
Thank you so much for this discussion, and Ren, for the profound
work you do.

I was interested to read that making a patient comfortable towards
the end might involve morphine and ativan. I find that reassuring,
that the (to me) scary emotional aspect of dying is addressed as
well as pain.

Is it typical for hospice to tell the family in detail what can/will
be done for the hospice patient, including what meds will be used
and their effects? Or does it kind of unfold as you go? 

I was also under the impression that you could stop hospice at any
time, so if, in a few of the instances above, if your loved one was
denied meds or not treated well, you could stop hospice immediately
and look for another option. Or is it a more involved process than
that?

I'm also interested in how it is determined that patients with
dementia qualify for hospice. If doctors don't see a clearcut
physical problem with an end likely in 6 months, do they still
authorize hospice for such patients?
  

    
Thanks for your questions, Nan dear.  

Telling the family what's coming depends on them.  Some people want
to know everything and come back with what they've learned by
consulting Dr. Google about the drugs we recommend.  Some just tell
us to do what we need to do.  You might want to know that, for
patients at home, we have a "comfort pack" that we deliver on
admission; it stays in the refrigerator until the drugs (morphine,
ativan, the one that dries up excessive secretions, Tylenol
suppositories - stuff like that) are needed.  Having them on site
means that the patient doesn't have to wait for a pharmacy to
deliver them when they're needed at that moment.  

The amount of information that families want on admission varies
greatly, but important to say that we never give drugs to patients
who can't speak for themselves without the primary care giver's
permission.

Yes you can stop hospice at any time.  One way is to go to the
hospital and another is to just say stop.  We've had a few patients
come to us from other hospices because families weren't getting the
service they wanted; this creates a little fuss with switching beds
and whatnot, but that's all.

There's a cool video making its way around FB -- ah, here it is
http://blog.thealzheimerssite.com/understanding-alzheimers-in-three-minutes/ -- that shows the process of forgetting that takes place in the brains of people with dementia.  When someone forgets how to eat or drink, death is coming near and hospice is appropriate.  But we've had quite a number of people with dementia come on our service and get discharged alive because they just stay the same for months and years.  
  

    

dropping in quickly to ask -- would it be possible to put the public URL
in the introductory post(s) of this topic? i would like to recommend it to
interested friends (keep an eye out for the very awesome Meg McH in here
soon). personally in a rush, trying to pack my house and move. it looks
like a wonderful conversation!
  

    

i did find it just now, but anyway, it might be handy to have in Posts 0
and 1, and/or topic header.
  

    
I was thinking the same thing, Tiff.  Found it and posted it on FB. 
http://www.well.com/conf/inkwell.vue/topics/489/Hospice-Today-and-Tomorrow-pag
e01.html
  

    
I'm finding multiple hospice organizations online in Washington cities like
Spokane, Bellingham and Seattle, Paulina. So if that restriction was ever
true, it's not now.
  

    
it must have changed, then. my friend told me this more than five yrs ago...