Inkwell: Authors and Artists

    
I really appreciate this topic and the work that you do in serving
the needs of the dying and their loved ones through information and
hands-on care.

When my dad was dying from lung cancer, we had a nursing service; we
decided, as a family, to ask for hospice care for him. The nursing
service tried to talk us out of it, but we insisted. My dad had some
emergency procedure that required hospitalization and the doctors
there recommended a hospice residence, versus hospice at home,
because his needs were so acute. He died on his third day there. The
hospice staff was very good, even with our short stay.

My mom has Alzheimer's and I hope to be able to keep her at home and
I will call hospice in when it's necessary. I wasn't clear on when,
exactly, it becomes necessary -- the disease slope is so
relentlessly downhill that it's hard to measure day by day; that
video makes it clearer to me about the decline and stages. Your
discussion here also has given me more information. Thanks.
  

    
My friend S. was given that care kit Renshin mentioned (atropine is
the secretion drying drug in it) and wished she had been given a
little more guidance from the start about using it. That was sorted
out after the start, but could have been smoother. Information is
one of the best things hospice offers, but as with anything else,
what is said and when and how is going to always vary, when it comes
through human beings. And it's not as if printed information would
be any better, in matters where so much is individual.

T died yesterday. Hospice was an enormous and indispensable help
every step of the way. They alone would not have been entirely
enough, one of the misconceptions I used to have, from mixing up
residential hospice and home-care hospice, was that hospice would be
there more than they can be when a person is dying at home. They are
one part of a larger community--but they are the part with the
knowledge, perspective, ability to reassure, and nurses and aides
who can help with what only trained people can help with best. For
S., during this last week, they have been right there with great
speed when most needed. Unfathomable to imagine how hard it would
have been to do this without them.
  

    
I hope that T died in comfort.  That is the goal.  And I send my
condolences to you and S and everyone else in the community of love.
  

    
Condolences, Jane, on the loss of your friend.

Ren, thank you for your answers above.

One thing that has happened from time to time is that I find myself
wondering if friends who have a loved one who is terminally ill are
aware of what hospice is, yet I don't want to ask them because it's
such a personal decision. When our friend Mary died, I wanted to ask
Gene about hospice because Mary so wanted to be at home, but Gene
didn't think he could care for her, so she died in the hospital. I
wonder if anyone has had this situation arise and if so, how you
handled it? 
  

    
I'd actually rather die in the hospital. For several reasons. I've a
notion that choice will not be mine, tho.
  

    
It can be yours, as long as you are a) mentally competent to express your
wishes about the end of life or b) have an advance directive that specifies
where you prefer to die and names a health care proxy to express your wishes
if you're unable to. And if that proxy is a strong advocate.

Jane, very sorry. I'm glad your friend could take leave in a gentle way, but
the sorrow remains.

Nan, I am shameless about mentioning hospice because I think there are so
many misconceptions, and that possibly correcting them could help families
with their burden. I say, "Have you thought about hospice care" and they
say, "Oh, we're not ready for that yet" and I say, "You can have hospice
care for many months; it's to support you through this period and your
relative doesn't have to be at death's door to have it."  Then I talk about
how my mother was a hospice patient for three months, and got to know all
the caregivers and nurses even though she felt there wasn't much for them to
do yet, so that it was a good team when she began to falter and need their
help.

Or I say, "Maybe you should talk to folks about hospice" and they say, "We
want to keep her at home" -- because they think hospice is a place, not a
service. So then we have that whole discussion. (Including the part where
someone has to be the caregiver on the scene, family or paid, because
hospice as Jane says provides visits and support and information but it's
not a 24/7 care provider.)

I find people confuse it with euthanasia. I find people don't know that
Medicare covers it. All kinds of odd misconceptions, considering it's been a
Medicare benefit for 30 years and now covers something like 40 percent of US
deaths.

So yeah, I say the h-word. And if people are uncomfortable or unsure, I urge
them to just call and have the visit from a nurse and learn what it's about
and what's provided.  They don't have to enroll and they can always
DISenroll if they want to. Have the conversation!
  

    
Thanks, Paula. That's extremely helpful.
  

    
Yes, it is. 
  

    

There's a subset of the "last minute" people that makes perfect sense to
me. A cousin of mine had a stroke and started improving. Then she had
another one and started improving. Then she had another one or several
at which point she was moved to hospice very soon before she died.

I was getting information second hand but the sense I got was
continuing hope that she would stablize. 

With chronic conditions hospice can and should be on the table with
acute conditions it's very hard.
  

    

For the unsure that's the best time to ask the medical team to suggest a
time for hospice to be included. Much better to be prepared earlier than 
too late.
  

    
This may be a somewhat superficial observation, but with attending
doctors so single-mindedly focused on "saving the patient", it may
be a hugely helpful practice to ask earlier rather than later when
hospice might become relevant.
  

    
But if the docs are really focused on cure, they'll say it's too
soon for hospice, and that's a problem.  People really need to get
educated about these issues for themselves.  I've had more than one
family member say that they had just done what the doctor
recommended, and if they'd known about the side effects of drugs and
how essentially futile the treatment was, they would have done
something very different with the time they had left.  
  

    
Well, I think it's still worthwhile putting the docs on the spot.
  

    
You're right.  And the change will happen in a generation or so. 
It's happening now but slowly slowly.
  

    
Renshin, the book you recommended to me last year, Being Mortal:
Medicine and What Matters in the End by Atul Gawande, has really
helped me understand some of these issues from a doctor's
perspective. Patients and families tend to interpret answers to the
question: How long do I have?, if a certain life-extending procedure
is suggested, in terms of years when doctors are thinking weeks or
months. Dr. Gawande has learned to rephrase the question to focus on
the quality of the life that remains and how the patient wants to
best spend that remaining time.

<http://amzn.com/B00JCW0BCY>
  

    
Wondering about advance directives.  I made one up not understanding
much about what a coma is, what a vegetative state is, what people
usually decide on.  I also remember with a relative who had dementia
and a growing intestinal tumor how we pored over her advance
directive trying to figure out what to do.  And how useless it was
for making those choices.  We sometimes don't imagine losing our
ability to make choices without being in a coma, it seems.  

Is there a good place to learn about how to write one of these
documents?  
  

    
Free template for an advance directive template:

<http://www.lawdepot.com/contracts/living-will-medical-power-of-attorney/?loc=U
S&ldcn=healthdir&pid=googleppc-health_us-MedicalT3_e1-s-ggkey_advance%20direct
ive%20form&s_kwcid=advance%20directive%20form|76713895265&gclid=Cj0KEQiAsP-2BR
CFl4Lb2NTJttEBEiQAmj2tbeMgVJHwqaenX7kcP8aQl6KsEyEBN_o6OofnM8qEVE0aAnht8P8HAQ>

Or here
<http://tinyurl.com/jx68cu2>

I  am sure there are others.
  

    
I worked with people with HIV in the 1980s and 90s, before protease
inhibitors were being used, so I went to a lot of funerals and
worked with a lot of hospice nurses/workers. I had wonderful
experiences and went through hospice training at one point, when HIV
hospice used volunteers.  When my mother was dying from cancer, we
eventually enrolled her in the hospice her oncologist recommended.
(This was in Berkeley) I was less than impressed with the care she
received. This was 15 years ago so I do not remember the specifics.
It just seemed like we did not receive the attention that I thought
we were supposed to receive, and that I had experienced in my HIV
work. She did die at home but we were alone except for the home
health worker that we had hired separate from hospice. The irony was
that the woman who was present when she died and specifically said
she did not want to be there when mom died.  I was really pissed off
and was GOING TO WRITE AN ANGRY LETTER to the hospice, but I could
never truly decide if I was so angry because my mother died, or
because they really deserved my wrath. So I never wrote the letter.

I also lived in Santa Cruz at the time and received grief support
from the local hospice there, just as <loris> did.
  

    
I'm sorry you had a bad experience, Julie.  

Gail, I like the document called Five Wishes because it is so
explicit.  For instance, my Five Wishes talks about what music I do
and do not want played when I'm no longer able to respond, and what
I want to be wearing at my own funeral.  Here's one source - it's
all over the Web:  https://agingwithdignity.org/    But the main
thing is to have a conversation with your designated decision maker.
Did you know that the person you've given the power of attorney for
healthcare to can override what's in writing? They can!  So make
sure they understand what you've written and why you've written it. 
And if your decision-maker is your spouse, consider the possibility
that something will happen to the two of you when you're together
and talk to a third person about it, too. 
  

    
A couple of other resources for thinking about and writing advance
directives:

The Conversation Project (founded by onetime columnist Ellen Goodman)
theconversationproject.org

And PREPARE, from UCSF palliative care docs:
prepareforyourcare.org

How physicians respond when you raise the subject of hospice will have a lot
to do with their ages (when they trained), their specialty (geriatricians
get it), their familiarity with end of life issues.

But I do raise it.  It's a signal, a dog whistle of sorts, as well as a
straightforward request for information. It says, in part: I understand my
parent/partner/cousin is nearing death and is unlikely to recover, and I'm
not interested in heroics and futile care that will just diminish her
quality of life.

Some doctors and nurses respond to this with actual relief. Now they know
that you are not expecting miraculous cures and they understand the family's
values. I've had medical professionals actually praise me for asking the
question. "I wish more families would go this route." I try to refrain from
some unpleasant comeback like, "Maybe more families WOULD if you ever
mentioned the option existed."

Other physicians will, as Ren says, react with horror and that to me is a
pretty strong signal for a second opinion.

I have heard this joke from hospice nurses: "Why do they nail coffins
closed? To keep oncologists from ordering more chemotherapy."
  

    
Ouch! (in a good way, of course)
  

    

It's a tragedy when a patient and family are clear about end-of-life issues
and the medical folks become obstacles. A not uncommon occurrence, alas.
  

    

gail - try getyourshittogether.org / gyst.org
  

    
>with chronic conditions hospice can and should be on the table with
>acute conditions it's very hard.

I don't know if this is universal, but here in Connecticut if you
talk to hospice about a patient with a chronic condition, the first
question they ask is, Is it terminal? And what they mean is, Is the
thing they have actually going to kill them in the foreseeable
future. If the answer is no, then hospice is not indicated. sadly,
being without hope of meaningful recovery does not translate to
terminally ill, and terminal illness is the ticket to hospice. 

On the other h and, if you are chronically ill and get, say,
pneumonia, you can refuse treatment, ask for palliative care only,
and now you can probably get hospice services on the grounds that
the infection will kill you. But that is likely to be a pretty fast
process. 
  

    
I think that differs a lot from state to state. My dad is in hospice
with some kind of lung situation or maybe heart, and as you can tell
he's not even diagnosed really. He does have a prescription for
oxygen, which is what put him on the list.