from whichever health provider we choose...

especially when it comes to something as sensitive as

end-of-life care.

Although there are literally thousands of hospice programs in

the U.S. - the beauty of quality hospice care

is that it empowers the patient and family

to have the best possible experience at such

a difficult time.

Rusty was a very intelligent,

loving, wonderful, well respected man in the community.

He loved everybody had a good sense of humor and he had an

interest early on in politics and in middle school his teacher

got him connected with a state assemblyman and Rusty decided to

run for office in 18- when he was 18 for Campbell and

at 21 he was elected mayor and that was a big to-do on

Good Morning America,the youngest mayor but-

and everybody said how could you run a city like that?

Well- Rusty did.

He was diagnosed with AML which is a form of leukemia in 2003.

He was 50 when he was diagnosed and he was 54,

almost 55, so he was 54 when he died.

Uh after 5 years of battling all the side effects,

being in hospitals in and out constantly,

having heart trouble from the chemo.

Having lung issues from treatment,

having a shunt put up in his brain,

being on oxygen 24/7.

His body was just deteriorating.

There were two hospices to choose from and

we chose one that was a little bit closer to

us, one that had been recommended by quite a few

different people.

And it was also a non-profit hospice

which was important to us.

So in hospice he was also writing his book.

And that way he could stay home and the nurse would come to us

and it was just much easier for him to complete this goal that

he wanted.

I think he wanted to keep in touch a lot with his nurse and

as he got -- he wasn't feeling well towards the end,

- it was hard for everybody to kind of help him feel less pain,

be in less pain.

And by golly they came and really helped.

And it was frustrating I'm sure for them too - but they kept

trying ah to make him feel comfortable and I think they did

a wonderful job.

With hospice I expected us to be able to stay home.

I just expected us to have a more calm life and what happened

was even better.

It was - it - it affected me.

I didn't have to go to the pharmacy,

the drugs were delivered.

I felt safe when I was able to call somebody on the phone at

hospice and talk to somebody.

I felt good when the nurse came and Rusty would joke with her

and laugh, he had a great sense of humor and so did she.

It was just a wonderful calming experience,

much better than I had thought.

Every hospice must have a business license.

That assures they have met certain requirements in terms of

their business practices.

If the hospice is certified by Medicare,

that assures they have met additional requirements

regarding the services they provide and

the quality of their care.

And some hospices choose to become accredited by one of

three national, independent accrediting agencies:

the Community Health Accreditation Program,

known as CHAP; the Accreditation Commission for Health Care,

known as A-C-H-C, and the Joint Commission for Accreditation of

Health Care Organizations, known as the Joint Commission.

Accreditation pure and simply to a consumer should

mean that this organization has voluntarily undergone an

external evaluation by an impartial,

third party expert evaluator to demonstrate that they go a step

beyond what's required.

They have taken the next step, beyond what's required by any

state law, beyond what is required by any federal

regulation, to demonstrate that their practices ensure that that

patient has the best possible experience.

As a particular segment of health care,

hospice is remarkably efficient in the way it delivers quality

care tailored to each patient's unique need.

Doing that always takes compassion,

and occasionally, it also takes innovation.

Well, Maya was a pretty normal girl she grew up in

south Austin and was one of 3 children.

The oldest, very artistic, loved her friends,

loved playing, loved our neighborhood community.

She went to a magnet middle school in 7th grade which meant

that she was academically a lot more challenged.

She had a difficult year, it sort of burst her fantasy bubble

regarding childhood and then at the end of that school year she

was diagnosed with leukemia.

it turns out that even after the heaviest battery of chemotherapy

Maya still had 89 percent leukemia cells in

her bone marrow.

And at that point there was not going to be any hope for her to

survive.

We went from Thursday, giving Maya the news that she

would not survive, to a Sunday morning visit from the

administrative nurse from the hospice organization to

interview us for hospice.

During that initial administrative visit with the

nurse, she was asked what would be a final wish?

And she said you mean I get to wish for anything?

And they said well within reason and they started giving

examples, and Maya latched on to the idea of being able to swim

with dolphins.

And they explained that we can make that happen,

we can fly you and your family to Sea World in San Diego and

they did that so that was an amazing gift.

The other thing that hospice made available to Maya is this

amazing palliative care nurse who went out of her way to learn

about pediatrics and also made a connection between Maya and an

elderly gentleman, who she was the nurse for,

who happened to be an artist.

The nurse knew that Maya was interested in art,

she had another patient -- a 70 something year old gentleman who

was a nationally renowned woodcarver.

So she convinces him to give Maya one of his carvings and

Maya gives him one of her poems and drawings and without ever

having seen each other, without ever having met,

Maya and this gentleman made a connection.

And they stayed in touch through the hospice nurse.

So to have someone from hospice come in and care for Maya and

make sure her needs were met and taken care of and then very

quietly leave was just a very beautiful thing.

And we always knew we could reach her by phone,

she was always on call for us and she would check in

frequently by phone, she knew that we were a family that was

pretty self-sufficient we had been through this year-long

cancer journey with Maya; we knew the ins and outs of her

treatment, we actually could do a lot of the treatments

ourselves with her guidance and supervision.

And she allowed us the privacy to spend the last 6 weeks of

Maya's life at home.

And I've said this before, it was the best 6 weeks of the

diagnosis.

It was heartbreaking to think that Maya was going to be gone

within 3-6 weeks, which was what the doctors had predicted,

but to be able to be home, as she said to have chicken

Mc Nuggets and to be able to go to a swimming pool and to her

beloved flower garden was a gift.

And hospice helped provide that gift.

People often are surprised to learn that their

personal physician can remain involved in their care even

after entering a hospice program.

Having the hospice medical director oversee a patient's

medical care doesn't mean that the medical team from hospice

comes and hijacks the previous care that the patient had been

receiving.

The hospice physician and the patient's private physician

collaborate initially, and often continue to do so - especially

if that's what the patient prefers.

I'm open to respecting that wish for patients just because I

understand they're more comfortable with the primary

physician and maybe a relationship previously

established, so I've called physicians before and said this

is what I recommend for Mr. Smith but Mr. Smith wanted to

make sure that was ok with you first.

And often times I've found primary physicians are

appreciative of being kept in the loop.

Sometimes physicians have told me that's ok you don't have to

call me anymore and please tell Mr. Smith that I respect

and I'm in agreement with whatever suggestions you make.

Because the primary physician respects the expertise and the

experience we've had managing symptoms.

Many members of the hospice interdisciplinary team

must be licensed and some earn certification that they've

successfully completed advanced training in hospice and

palliative care.

For example: medical doctors can become board certified in

hospice and palliative medicine; Certified Hospice and Palliative

Nurses - can earn the initials CHPN or CHPLPN;

Certified Hospice and Palliative Nursing Assistants can

earn the initials CHPNA;

A social worker with the credentials BSW has a

Bachelor's Degree in Social Work; the initials MSW signify

a Master's Degree in Social Work. 

In many states, social workers may also be licensed with

initials such as LSW or LCSW.

Hospice chaplains are eligible for many certifications -- here

are just a few: BCC -- Board Certified Chaplain

CPC -- Certified Pastoral Counselor

PCS  -  Pastoral Care Specialist

Depending on where you live,

some certifications may be required,

others are voluntary.

You can check with the hospice about the credentials held by

their staff.

Hospices that accept Medicare are required to measure the

quality of the care they provide and report back to the federal

government.

The Institute of Medicine has identified what they call six

"aims" for healthcare quality improvement:

Safe; Avoid patient injuries from care given

Effective; Evidence-based care with neither underuse

nor overuse of available techniques

Patient-centered; Patients and families should be actively

involved in the plan of care

Timely; Providing prompt attention benefits

patients and families

Efficient; Reduce waste

Equitable; Racial and ethnic patients receive equitable care.

Hospices can and should improve their quality --

continuously -- by gathering and then analyzing data by which

they can measure their performance.

We want to compare ourselves to other hospices

across the country.

And that gives us a really good indicator of whether we're doing

a good job or not.

We also ask our physician refer-ers what do they think of

the care and services that we provided for patients and

families?

So there's many ways that we look at quality both internally

organization wide, not just our clinical programs but also- very

importantly going back to the consumer and saying

how did we do?

And I think as a consumer you should really look towards an

organization that's continually involved in that process.

Finding the hospice that is best for you or your loved

one might take some effort; sometimes your choices may be

limited by your location, or by your insurance,

or if you don't HAVE insurance.

But if you do have a choice of hospice providers,

I really believe it is worth the effort to speak with a

representative from each.

Ask questions.

Compare.

My mom was Gertrude Weissman and she was a

remarkable woman.

Both of my parents were immigrants and they

came to this country for a better life in that

World War 2 period.

They met at night school learning English.

My mom was from Czechoslovakia,

she was one of these people that was a born mother.

She was a terrific mother, wife, sister.

She was the person that everyone in her family talked to.

She was just a very accepting, non-judgmental person.