“This is how I choose to live thanks to Hawai‘i Care Choices.”
81-year-old hospice patient, Betty Jane “BJ” Pa has been dancing all her life. After spending her working years in retail sales and dancing hula professionally, she has spent her retirement in continued service to the community. BJ has no desire to let her condition stop her from doing what she loves – a testament to what Hospice Care can do when accessed early on in a terminal diagnosis. Told to get her affairs in order after a doctor’s visit to Honolulu, BJ had several emergency room visits before she heard about how hospice could help. It has been almost a year, “If not for hospice I would probably be gone by now.”
BJ heard about the program from Hawai’i Care Choices’ Clinical and Community Relations Manager, Lani Weigert. Lani gave a presentation at Alu Like about another program from the organization – Kupu Care, community-based palliative care. BJ says, “When I went to the office to apply for Kupu Care I was told my condition was a little more serious so, they referred me to hospice. Which I am so thankful for.”
BJ says the process was easy. “They explained what their services were. They came to my house. My husband was there. It was very good. And the nurses I’ve have been wonderful.” BJ reports that she is, “so happy because whenever I am not well, they are right there. They come once a week; sometimes they come two times a day. Whenever Iʻm not well I make a phone call, whether it’s midnight or 3 o’clock in the morning, they are always there for me.”
BJ explains, “When I used to go to the hospital emergency room, they would give me morphine and oxygen, and tell me they couldn't do anything more for me, even admit me, so every time I was going, it was all for nothing. Now, I call hospice, and they are there for me. They are always calm and nice, they keep you at ease. Now the morphine and oxygen are included. I don’t have a bill, and I get to stay home.”
“I didn’t know till one of the nurses told me it’s covered by Medicare,” BJ reports with a laugh. “If not for hospice, I would’ve had all those bills to pay on my own, so hospice has saved me a lot of money; and time. I was just shocked how much hospice provides for the person.”
When asked how the quality of her life has changed since accepting hospice care, BJ answers, “I’m not afraid anymore because all I have to do is call them and they tell me what to do.” BJ’s eyes light up, “I am still dancing hula, still shaking my ‘okole,” she says with a big smile.
Married for 60 years, BJ is relieved that hospice is also supporting her 83-year-old caregiver husband. “If anything happens all he has to do is call hospice. And when they come, he asks them a million questions. It is such a blessing for him too that hospice is taking care of me,” says BJ. “And if my husband has something to do and I’m not feeling well, someone comes and babysits me,” BJ laughs. “He’s afraid to leave me alone, so having someone at the house – he feels safer that I’m not alone.”
BJ admits before coming to Hawai’i Care Choices, she thought hospice care was only for “people who were about to ‘make,’” about to “leave this world.” After a year in the program, she now understands. When asked what she would tell someone who thinks hospice is only for “people about to die” BJ explains, “I would say you have nothing to lose, and they should try it because it is a wonderful program. I am so grateful. I have been trying to pass the word on to different people and let them know about hospice care, and that it doesn’t mean you a ready to leave the world; they are there to help you get better.”
For people afraid to ask for help BJ wants them to know: “I would tell them I felt the same way too, but after I found out for myself what it was like, and what they provide and how they care for you; I would recommend it to everybody. Anybody who needs it, don’t be afraid - all you can do is try, if you don’t like it, that’s your prerogative. But give them a chance, they are a wonderful organization. Don’t wait until it’s too late.”
“Early access to hospice care was the key for BJ,” says Lani. “Hospice has not hastened death, but instead, boosted BJ’s quality of life. And because hospice is covered by Medicare, BJ has paid nothing.”
Unfortunately, there is still great confusion over the difference between palliative care and hospice care. (Palliative care is for patients estimated to be within the last three years of life. Hospice care is available to terminally ill patients with a prognosis of six months or less.) Many still think that end-of-life care is for the last few days or weeks of a person’s journey. The Stanford School of Medicine found a majority of deaths still occur in the hospital (60%) or in nursing homes (20%), even though the majority of American’s surveyed state they would prefer to die at home. Ending well means thinking about what is important to us years before we begin our final journey. The best End-of-Life care is a continuum that begins with awareness and planning and is activated at initial diagnosis, preferably years before entering the last few months of life.
If you, or someone you love, has recently been diagnosed with a chronic or terminal illness, call Hawai‘i Care Choices to discuss where you and your doctor believe you are on the continuum of care, and learn how we can help. (808) 969-1733. The earlier you reach out – the more we can help.
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