Subtitles section Play video Print subtitles 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. Many members of the hospice interdisciplinary team must be licensed and some earn certification