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Hospice is a philosophy and practice of palliative care for
terminally ill patients, focusing not just on medical support, but
also attending to emotional and spiritual needs. In the U.S.,
hospice care is a benefit offered by Medicare and Medicaid, a system
of care usually delivered at home but sometimes in a dedicated
hospice facility.

From its beginning as a volunteer movement, hospice in the U.S. has
grown into a multibillion dollar industry, with large for-profit
corporate chains of hospice organizations appearing in addition to
the smaller non-profits.

How much we know about hospice care usually depends whether we’ve
encountered it personally as end-of-life care for a friend or
relative.  We  keep thoughts of aging and death at arm’s length, for
the most part, until and unless we encounter it in some part of our
lives. But aging, illness, and death are inherent, and getting more
attention with the aging of the baby boomer “demographic bulge."

We’ve asked three members of the WELL who are focused on hospice to
join us for a two-week discussion about the current state and future
of the hospice movement (and industry).

Paula Span is a veteran journalist and a professor at the Columbia
University Graduate School of Journalism.  She writes the New Old
Age, formerly a blog about aging and caregiving, now a print and
online column, for the New York Times.  Her book "When the Time
Comes: Families With Aging Parents Share Their Struggles and
Solutions," was published by Hachette in 2009. She has helped care
for three family members who have died, two with hospice care.

Renshin Bunce has worked as a professional hospice chaplain for the
last six years. Before that, she lived at worked at San Francisco
Zen Center where she ordained as a Zen Buddhist priest.

Elisabeth Wickett hosts the Hospice and Gimp.ind conferences on the
Well.
  

    
Jon, so glad you have given us -- and everyone out there -- a chance to talk
about hospice care.  It's been a Medicare benefit for more than 30 years, it
provides services to more than a million and a half Americans a year, it can
do so much to help families and terminally ill people have comfort and
autonomy in their last days -- and I find it's still so little known and
misunderstood.

Wondering if Ren and Elisabeth agree.  People tell me about how ill their
relatives are (usually older adults but not always) and how fragmented and
unhelpful their medical care is.  I say, "Perhaps it's time to talk to a
hospice organization."  People say, "We're not there yet."  Or they say, "We
want to keep her at home." Or other things that show that for all its
growth, hospice still seems dogged by misconceptions or, maybe, just our
collective unwillingness to think much about the end of life.
  

    
I think it's the latter, Paula -- as if we're all whistling while we
walk past the graveyard, hoping death will never come to us or
anyone we love.  We do hear misconceptions about hospice such as the
idea that as soon as we arrive people die, and even that it's part
of our charge to hasten death, but I think the reluctance to start
hospice is a reluctance to deal with death at all.

We often have a meeting with relatives after a patient is admitted
to our service so they can meet the team members (nurse, social
worker and chaplain – doctor, home health aid and team manager are
available but generally don’t attend these meetings) face to face,
and so we can go over hospice guidelines and standards with them in
an atmosphere that's less stressful than their admissions meeting. 
When I remind them that their loved one is on hospice because a
doctor has signed a piece of paper saying that it appears that there
is a) a terminal illness for which there's no further treatment and
b) that they have less than six months to live, I'm often asked what
happens if the patient lives longer than six months - as if we kick
them to some imaginary curb because they've exhausted their hospice
benefit.  In fact, we keep people on our service for as long as
they’re showing signs of decline.

If a patient is admitted when they’re already actively dying, we can
be helpful in controlling pain and agitation.  But if we’ve been
with them for months before they start transitioning, we can be much
more effective in providing physical and spiritual comfort simply
because we know them and they know us.  When I first started working
in hospice, six years ago, it was not unusual for old people with
slow moving diseases to stay on our service for a couple of years
and then die in comfort.  Medicare audited all of the big hospice
companies a few years ago and took back a lot of money because they
claimed companies were treating patients who were inappropriate, so
things have changed – it’s not unusual for us to discharge someone
"for extended prognosis," that is, for being too healthy for
hospice.  This is often a source of joy for the family, but if we've
been providing in-home care to a patient and family with limited
resources, losing our service can be quite stressful. 

The simple fact is that we don’t hasten death and we don’t prolong
life.  We just meet the patient where they are, and do everything we
can in terms of beds and wheelchairs and suction machines, diapers
and wipes and all medicine necessary to address the disease that
brought them to hospice, and staff who are familiar with the
territory and know how to control the symptoms.  And it’s all free.
  

    

My mother died without hospice, which was not our choice at all. She was in
long-term care and the institution was building a hospice section. During 
construction, they refused to bring in a hospice team to the facility to 
care for my mother. All she really needed was adequate pain medications. 
Instead of having hospice ease her death, she was brutalized by nurses and 
a doctor refusing morphine because of possible addiction and because it 
could slow her respiration. Hers was an agonizing death, which was completely 
unnecessary and totally inhumane. I watched and did all I could for her. 
She was 98-years old. I was her only daughter and also her hospice team.
  

    
Welcome and thanks to all three of you. I'm looking forward to an
interesting and informative conversation.
  

    
This is a very nice idea - thank you.
  

    
I'm glad this got set up, and I'll be reading with interest.
  

    
Me, too. We had hospice for my aunt who remained under my sister and
my care at sister's house her last month. Nurse came out every
couple of days. I was impressed with them. On morphine. Went well.
As such things go. Funeral home all arranged. Our family cemetery
ready. Still sad. But she was ready. The beloved husband long gone.
The interim not as beloved one also gone. I sat and looked at
pictures and listened to her until her stroke then we talked to her
tho she didn't react. She was 99. 

I suspect I shall be all alone when I go. They'll have to take me to
a place as I couldn't stay at home. Id require expensive round the
clock nurses and I'd be more comfy at a place than here. I just hope
I make it that far. And that my pets go first. Tho i shall be sad. I
don't want them ending in the pound. 

I have no family that would care for me as we cared for my aunt. So,
will read here with interest. 
  

    
Elisabeth, that is a horrifying experience.
I'm so sorry.

Maybe we should talk a bit about what hospice is and does.
--It's covered by Medicare and Medicaid, so free to the elderly and the
poor. But anybody of any age, including kids with terminal diseasees, can
use hospice care at end of life.  Most private insurers cover it too.

Although there are a few residential hospices, in most cases hospice care is
provided in people's own homes, or in the places they live -- nursing homes,
assisted living, relatives' homes. That is where most people want to be
where they die -- at home, not in ICUs.

And as Ren points out, patients have illnesses from which they'd be expected
to die within six months -- but predicting length of life is notoriously
difficult. Those who live longer can keep getting recertified for hospice.

A big issue is that people wait to long to enroll. However skilled a hospice
staff is, there's not a whole lot they can do for people who enroll within
days or hours of death.  More time means better care.
  

    

Thank you, Paula.
  

    
Share this conversation with your friends and followers using this
link: http://bit.ly/inkwell-hospice

If you're not a member of the WELL, but want to add a comment or
question to this discussion, just send in an email to inkwell at
well.com.
  

    
I worked with hospice caring for three friends and with my dad's
dying. My brother and I hd a hard time convincing dad to bring them
in because he felt he was "giving up" and they might speed up the
dying. But establishing that reltionship while he was still feeling
good and didn't need them so much was critical to how well it all
went in the last, much more difficult weeks. He loved his nurses,
one in particular, and I'll always feel they became part of our
family.
  

    
How long was your dad on hospice, reet?
  

    

I'd be interested to learn about how the ideals and organization of hospice
have evolved within medical school curriculums and the geriatric specialty.
  

    

am a total hospice advocate but hate what medicare has done to it in recent
times (i have friends who work in hospice); ppl not being admitted to
hospice when they really should be or being kicked out for not declining
fast enuf (this happened with my mother: she was kicked out of hospice and
10 weeks later was dead. ta-da!).

also, it's criminal that except at the very end, hospice doesnt supply the
24/7 caregiving such situations require: that falls on the family or
private-pay.

but then, our whole healthcare delivery system is predicated on -procedures-
and not on care, so...
  

    
I'm with you on part of that, Paulina. Medicare has been auditing hospices
to prevent fraud or misuse, supposedly, and it's left hospices frightened
about keeping people enrolled if they can't show continuing decline. So yes,
people have gotten bounced for "not dying fast enough," and even though they
can then go back on hospice care, it is jarring and disheartening to patient
s and families.

But hospice has never provided 24/7 caregiving. This isn't a Medicare issue;
it's the way the program is designed. It's always been intended to provide
support to families (or paid caregivers) who do the round the clock care, by
bringing in nurses and aides and social workers and chaplains.  But it's not
on the scene every moment and it's hard to see how it could be.

No part of our health care system, Medicare or otherwise, provides that and
we can and maybe should rail about it. But it's certainly true that you can
get Medicare to pay for an MRI but you can't get it to send you a helper
three hours a day to do the laundry, make a couple of meals, and give you a
bath -- except right after a hospitalization.

My column on getting bounced from hospice (featuring two WELL members and
their parents) here:
http://newoldage.blogs.nytimes.com/2014/01/07/bounced-from-hospice/
  

    
What Paula says is accurate.  

Another misconception that we deal with surprisingly frequently is
that there is "a hospice."  There are a bunch of companies, both
for-profit and non-profit, that contract with Medicare to provide
hospice services.  Hospice is, like everything else in our country,
very competitive, and I think my company's willingness to provide
bedside staff is one reason we're so successful.  
  

    
So. IS there care homes in hospice? A place I can be admitted for
those last few days?
  

    
There are hospice facilities in some places. I knew a few people who
spent their last few days in one in Columbus. It was by all accounts
a good place to be.
  

    

oh i know medicare (or any other insurance) generally doesnt provide care,
except in certain 'skilled nursing' situations. was just railing about the
system in general.

i know the zen hospice in sf is supposed to be great --- but again, it has
to be private-paid --- because, who knows the hour of his/her death? until
it's at the very end (as when my mother had her major stroke --- then
hospice was brought in to administer the morphine to ease the breathing, and
was gone in 36 hrs), one could realistically -be- 'in hospice' for months.

was just thinking of a friend whose husband died of lung cancer, kept at
home; there were all the private caregivers she had to hire in addition to
her own own constant caregiving; and over labor-day weekend, when he was
really going down hill, the hospice she had signed up with --- had no one AT
ALL available to help her/provide help + guidance in what where his final
days.

one other societal resource we dont fund as we should (as i always say, all
money flies upward to the hedgefunders).
  

    
The aim of hospice is laudatory, obviously, but here are some
concerns I have:

Hospices are of varying quality, we found out when my dad was
terminal, so ask everyone: caregivers, long-term administrators,
etc. before you sign on with one. 

There's a conflict between "curative" and "palliative" care that can
cause problems. Parts of a person may be dying and parts still able
to improve, but due to structural/bureaucratic factors, hospice can
only provide "palliative" care. This can cause absurdities and
suffering.

Lastly, I am a great proponent of death with dignity and in some
respects, this conflicts with hospice. I'll make a generalization
about the philosophy of hospice, that death is a process, a
meaningful process and that hospice feels 1) that you should go
through the whole thing A to Z and 2) that they can handle any kind
of pain that accompanies the process. In many cases, this works out
fine. I think there will be cases though, where an unspeakably
horrible death awaits and in those cases, there is nothing to be
gained by interfering with a patient's desire for a graceful exit --
nothing to be gained by enduring those last few weeks or months. 
  

    
right, the philosophical conflict between hospice and death with
dignity (compassion and choice) --- may become more of an issue with
time.
  

    
I do wonder, since they gave us a bottle of liquid morphine to give
to my aunt, if sometimes the family, watching them sink into that
stupor, don't give just a bit more than they ought. Not saying they
deliberately kill them but that maybe in an effort to relieve them
they shorten the time between doses or mistake the amount. And if
they do, well. I can't say it isnt a blessing. 

My aunt lived two weeks after the stroke that basically rendered her
comatose. She had already reached the point where she no longer
drank or ate anything. Just lay and moaned until you gave her the
morphine so she would settle to quietness. 

BTW. The pamphlets and instructions and descriptions. Teaching, if
you will, of the family when they were about to start taking care of
this loved one in their last few days was very good with this one
place. It's hard to not want to find something to FEED or liquid to
get into them. But as explained, their body doesn't want it. It goes
against desire to nurture. And is hard for the caregiver. 
  

    
I think the hospice concept is great, but the practice varies wildly
and is sometimes very bad.

The curative/palliative drug distinction is the source of some
problems I've heard of. E.g. A woman went to the hospital on Friday
after having fallen, was "put on hospice" and was immediately denied
her anti-edema medication. By the time her doctor, who had prescribed
the medication, showed up on Monday, it was too late. Hospice
treatment killed her, probably months earlier than she would have
died.

I know of another woman, with advanced cancer, who was denied a
drug on the grounds that it was fighting the cancer. But it was
fighting a symptom that was causing her pain. It wouldn't save her
life, but it would prevent some of the pain (and damage) she
would experience before her death. It would do so without the
narcotic effects of the straight pain drugs. I hope I am remembering
right that her advocates were able to get that decision reversed,
though not easily.

It seems to me that if I wanted hospice care for myself or others,
I would have to do a lot of research to find a situation I
trusted, and that worries me.
  

    

yeah, it is so distressing that even with something which conceptually is an
unalloyed good such as hospice --- as with practically every other
mainstream medical intervention one can think of these days, one needs lots
of research and lots of folks-not-the-patient as watchdogs. and quality
varies hugely.

a friend remarked to me that when it gets to be time for him, he intends to
go to mexico and get his own IV morphine and hang out on the beach. i dont
know how realistic that is --- but expressed his desire to NOT be in the
mainline care-system.
  

    
Me, too. You aren't exactly in the sharpest, smartest, best decision
making frame of mind just then.