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  • I think we all expect the highest quality care

  • 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.