Inkwell: Authors and Artists

    
It's the same nationally, because it goes by Medicare guidelines. 
If a doctor signs a piece of paper saying that the patient has a
terminal condition and appears to have less than six months to live,
that triggers hospice.
  

    
So if you tell a doctor you want hospice for your loved one, the
doctor can say no, and then you can't get it?
  

    
You can go to another doc. 
  

    
And in that particular scenario, go there immediately!
  

    

Just catching up on this excellent conversation.

I've had experience with hospice from a couple of different angles,
so I wanted to talk about how MY expectations of what hospice provides
changed as I grew to understand the program better.

My dad, who died of pancreatic cancer some 25 years ago, was on hospice for
the six short weeks he lived after diagnosis. I was frustrated with the 
service because I didn't really understand what they could and could not
do. I felt ... uh ... well, like my dad was not getting all the care he
should have from them.

My mother, who broke world records with her lengthy battle against 
Alzheimers -- it won but it took twenty-one years -- was entered into 
the program four times over a span of about nine years. The first three 
times she was in hospice, she ended up getting better so they released 
her from the program. Getting out of hospice by NOT dying is called 
"graduating." It wasn't until her 4th enrollment that she stopped 
"graduating" and finally passed. I like to tell people that by the
time she died, she'd earned a doctorate in hospice.

I also spent a few years working for a homecare agency as a caregiver 
for the elderly. For a while the agency had me working as a private hire 
with an old woman on hospice. Though I wasn't an employee of hospice, I 
interacted with the hospice staff that came and went while I was sitting 
with this old woman.

With each engagement with hospice, I came to appreciate their work more.
Of *course* they can't do 24/7 care, there's simply not the budget for
that kind of cost in hospice. But boy oh boy, they really can do a lot.
Obviously, there's the pain relief they can provide, and these days
that's huge! Recent legislation clamping down on opiod prescriptions
has made it nightmarish for people in pain to get relief. Hospice cuts
right through all that legal red tape that would hobble a family
member trying to get necessary pain meds for a dying loved one. 

It's not just about pain control, though. There are aides who will come
give the patient a gentle, soothing sponge bath. In my mom's case, there
was a chaplain who'd always sing to my mother when she visited. There
were even volunteers who'd read to her, or just sit with her, holding
her hand and stroking her hair. 

So to me, the greatest thing about hospice is that it sees the patient
as a whole human being, not a weak heart, a set of failing kidneys
or a brain that's barely working anymore. The kindness and generosity
of heart of all the hospice people I've encountered has been remarkable.
  

    

Oh, and upthread here, <gail> talked about setting up an Advanced Directive.

That's a good thing to have, but even better is a POLST:

wikipedia.org/wiki/Physician_Orders_for_Life-Sustaining_Treatment
  

    
Thanks for that perspective, Cynthia.

So that makes three of us who had experience with hospice 20 to 25
years ago and felt it was lacking.  I guess something - and I'm
thinking it was competition and market forces, maybe Medicare too -
happened to give us the full service we see today.
  

    

I did a hospice internship as part of my Counseling Masters Degree in 1991.
At that time, hospice was relatively little known.  It was hardly the big
business that it is now.  It's my impression that hospice became seen as the
cheaper way to manage deaths.  The fact that it is more humane seems to me
to have been a secondary motivation.

My impression was that the quality of hospice care varied with the hospice,
the team and the patient.  There was tremendous burnout among the staff, it
was worse and much less support was available for the lower level caregivers
such as CNAs, etc, especially the homecare givers who were the most onsite
for the most time.

The services provided were the same as today.  Perhaps there is more and
better training now as well as more experience overall in the field.
  

    

>  three of us who had experience with hospice 20 to 25
 years ago and felt it was lacking. <

Actually, what I was trying to get at in my post above was that my 
expectations the first time around were unrealistic. I thought hospice
would be providing a caregiver round-the-clock, that a hospice
doctor would do a home visit, that hospice aides could be scheduled 
every single day. So when I found out that's not how it works, I
felt frustrated. 

Second time I encountered hospice, I knew better what the parameters of
the service would be. Also, when my father was put on hospice, my 
mother was the one who met with the hospice worker who explained what
would be provided. She was in such a deep fog of grief that I don't
think she remembered much of the meeting. When I invoked hospice for
my mother, I learned firsthand how thorough the initial meeting is.
  

    

Hospice has great organizing capability, which includes managing
expectations. I wish such thoroughness and coordination informed medical
care throughout the life cycle.
  

    
I have to say, while I appreciate the hospice movement and its goals,
my own up-close-and-personal experience with it (my dad's final
illness) was not great, and was very much a contrast to previous
experiences (at a greater distance).  

In the early 1990s, several friends -- not close friends but more like
friendly acquaintances -- spent their last days at Coming Home Hospice
in San Francisco, a bricks-and-mortar facility in the Castro District. 
It was a pretty amazing place with exceptional care and kindness, and
a staff dedicated to providing 24/7 care. (Almost all the residents
were young or middle-aged men with AIDS.) It was independent then (I
think) but is now part of CPMC, a large hospital with mutiple
campuses.  There was no sign of bureaucracy or institutional bullshit,
it was just a loving, supportive environment with its own unique
culture. I was a financial donor to their fundraising campaign and
since I was part-owner of a condo across the street where I spent time
with my then-girlfriend, I stopped in often even if I did not know any
of the residents, and helped people learn to use the shared PC to access 
online services and BBSs. 

By contrast, the for-profit hospice service that I retained for my dad
in the last two weeks of his life, in a nursing home, was somewhat
of a disappointment. Based on Coming Home Hospice, I had very high
expectations, but in reality, out of all the time the visiting hospice
workers spent at his nursing home, about 20% of their hours were
actually spent in his room providing assistance, about 60% was filling
out paperwork by hand or on a laptop, and the last 20% chatting with the
nursing home staff. I was seriously underwhelmed. There was one excellent
staff member, an RN, who seemed to be genuinely concerned with my dad,
and spoke at length to me about his condition and what to expect. The
others simply came and went and could not wait to get out of there or
else set up their laptop in the dining room to do paperwork. They
seemed to be yet another institutional provider interested more in 
insurance billables than anything else.  

Just based on that, and the stories I've heard from others, it looks
like something has happened to the hospice industry in the last 20
years, and it is not a positive development. 
  

    
Michael, comparing residential hospice to services provided to a
patient in a facility is really comparing apples and oranges.
  

    

<mcb>, in 20 years it became much more commoditized.
  

    

All these experience speak to the diversity of local hospice organizations,
in part.

But in part, it may also reflect, as Lena points out, the way hospice has
evolved from local nonprofits often started by volunteers -- and nonprofits
still exist, of course -- to a big business.  The growth in the past decade
or so has been in the for-profit sector, and more specifically involves
large national chains.

The emerging research does indicate that for-profit hospices provide fewer
services, though the difference isn't enormous.

Which makes sense.  Within a given geographic area, every hospice gets the
same reimbursement from Medicare. So how do you squeeze a profit out of
that? Especially since nonprofits benefit from fundraisers and philanthropy
and memorial donations from grateful families, all far less likely with for-
profits. The only way I can see to make a profit as a hospice is to a) pay
your people less (never a great thing) or b) provide fewer services.  The
for-profits would argue that they benefit from economy of scale, and yes I
suppose if you're buying supplies in vast quantities, you save some money
there.

But hospice care really doesn't involve a whole lot of supplies and
equipment and is much more reliant on staff and their care.
  

    

So, are do non-profit hospices provide noticeably better care than for-
profit?
  

    
i think, 'it depends'
  

    
There hasn't been a lot of research, but what there is points to some
differences.

For instance, for-profits are more likely to bounce patients:

http://newoldage.blogs.nytimes.com/2014/03/03/differences-in-care-at-for-
profit-hospices/
  

    
One of the earliest hospices in the U.S. was the one that still
exists, Zen Hospice, in a small Victorian on Page Street in San
Francisco. (The same group, as I think has been mentioned, also does
hospice work in a public hospital ward, Laguna Honda.) An early PBS
documentary featured this hospice--and it may be that the idea of
full time care goes all the way back to this piece introducing the
concept of hospice to Americans. It remains a kind of ideal, and the
hospice, which long ago became an entity independent from S.F. Zen
Center, who founded it, is still a place devoted to awareness,
accompaniment, care in the fullest ways. It also trains volunteer
hospice workers--the local monologuist, Josh Kornfield, has been
performing a very moving piece about his time there, as their first
artist-in-residence but also mostly as a person who volunteers.
Still: there are only a few rooms in the building. What we want for
all who must enter hospice is mostly far from what happens in that
earliest example of the idea put into action.

When my mother was very close to dying, two years ago now, the
hospital's palliative care meeting with me consisted mostly of them
pressuring me to authorize her transfer to a different location, a
hospice to die in (had she died, it would have been within a day or
two). Her own physician resisted this, knowing my mother in ways the
hospital did not, and saying that if my other were to be stopped
being treated, she could very well die in that hospital, moved out
of intensive care but not out of the building. This whole
experience, I think, was for me an example of the concept of
"hospice" at its very worst. A hospital wanting to save money
basically, and using the ideas of palliative care and hospice to
pressure a family member to let them quit treatment. (My mother is
still alive and doing well.) 

I feel as if I've seen the full range of possibilities at this
point--the residential Zen Hospice with its small number of people
receiving 24/7 care; a friend's recent death with hospice support
intermittently present but invaluable; and the experience two years
ago of that hospital meeting and how they mis-handled it. I am lucky
to have had these multiple views. We can't help but generalize out
from single experiences, but if we've had multiple ones, we can try
to seek out the best, knowing it exists, and avoid the worst,
knowing it exists. (I don't know what the places would have been
like the hospital wanted to transfer my mother to--perhaps very
good, for all I know, in different circumstances. But still, if a
person is going to die very shortly, do we really want to force an
ambulance ride on them when they could simply be taken to a
different floor of the same building--and an ambulance ride whose
very definition is that they are being shipped somewhere to die?
  

    

Valuable first-hand experience and insights. Thanks, <jh>.

Thank you, Paula, for your 2014 column noting some of the differences
between for-profit and non-profit hospices. It's telling to read that
article side-by-side with <jh>'s post.
  

    

I wonder how much of the difference is really about management.
  

    
Even where residential hospices exist, most are not like the Zen Center.
They take patients mostly for a few days when families or caregivers can't
manage their symptoms at home. You can't stay there for weeks.

Probably there should be such places, or more such places.

But let me note that when hospital staff or other medical types seem to be
pressuring families to enroll in hospice, it's likely not for financial
reasons.  Hospitals make money, like doctors, by doing procedures and
interventions and getting reimbursed for them.  They would have made more
money giving Jane's mother a feeding tube or putting her on a ventilator or
transferring her to an ICU or at the least just keeping her in a hospital
room. The reimbursement for hospice is fairly low and probably the least
profitable option, for the institution.

But overall, by avoiding ER visits and hospitalization and procedures,
hospice care does save the health care system money as a whole, and that's a
worthwhile thing.
  

    

If they are Medicare or Medicaid patients the reimbursement is low, whether
hospice is lower I don't know but one big difference is that hospice doesn't
have the infrastructue and overhead costs that hospitals do.
  

    
Perhaps I don't/didn't understand what was going on--it was an
intense time and that conversation was the very first thing that
happened after I arrived. She was in ICU and the hospital wanted me
to authorize transferring her out of the ICU and out of the hospital
to a "place she could die in comfort." Her physician insisted they
keep treating her for a few more days at the level they were, and
that is what worked. She was of course at her age a Medicare
patient, but with some kind of supplemental insurance as well, if
that applies. I don't know if what they were doing was about money
or something else. All I know is that I felt shocked and pressured
by the conversation, and that in retrospect it's clear what they
wanted to do was something that would have resulted in my mother's
death and not recovery. 

I'm not a life-at-all-costs-for-as-long-as-possible kind of person,
I should add. Neither is my mother. I believe in hospice. But this
was an infection, and treatable, and the two years my mother has had
since then have been years I am glad she has had, and she is as
well.

The story isn't really about hospice at all--it's about the hospital
and about how the idea and understanding of hospice can be so
many-sided in our minds.
  

    
To help return the conversation to hospice, I wonder how many other
places there might be like the original Zen Center hospice? During
the HIV-AIDS epidemic at its worst, there was another Zen-initiated
hospice in the Castro, also residential. I wonder if full-care,
small residential hospices may not somehow be linked to both real
community and also perhaps spiritual communities. Mother Theresa's
caretaking in India comes also to mind. Perhaps it takes something
extra for people to be able to do/sustain this very particular kind
of care-taking over the long term.

I don't know how a person qualifies to enter the small residential
Zen hospice building. It is not at all people from the Zen
community. One long term Zen priest, the poet Philip Whalen, was for
many months at the hospital ward arm of the program, in Laguna Honda
Hospital, not in the smaller building he had spent so much of his
life living near. 

If a person has a home and enough help from family or caretakers
there, is that the primary hospice model these day? Or is there no
primary model, just the mix of circumstances people find themselves
in--in nursing homes, assisted living places, hospitals, homes, and
dedicated hospice structures?
  

    
Hospice stats say that most patients die at home "or in the place they call
home," which includes assisted living and nursing homes.

Here's how it broke down in 2014, the most recent year there are figures
from the National Hospice and Palliative Care Organization:

Private residence: 36 percent (rounding off)
Nursing home: 15 percent
Other residential facility: 9 percent
Inpatient hospice facility: 32 percent
Hospital: 9 percent

I'm actually surprised at how high the inpatient hospice percentage is.