FEATURE:

The Final Journey

by Ashley Cobb

“It wasn’t our imagination,” Young says. “We all saw that, but we didn’t know how to explain it.” What the family did know was that Tai E’s deceased brother, Robert, used to blow rings as he smoked; was he in the room urging Tai E to join him?

While Tai E may have been willing, Young wasn’t ready to let her go. “I couldn’t accept her dying,” she says. “She was like a mother to me. So I prayed. I thought, Please don’t take her right now. It’s not her time. She can’t leave me.”

Young cared for Tai E virtually round the clock for the next few days. “Slowly, she responded,” Young says. “Everybody was so happy; they couldn’t believe it.” She pauses, looks down and whispers, “But she was never the same.”

Until Tai E passed away on March 27 at the age of 99, she was bed-bound in her Waikiki home. Young was her devoted, full-time caregiver for two years — a responsibility that often left her exhausted. But she found help through hospice, a support system that assisted her tremendously with caregiving, educated her, and provided her with emotional and spiritual guidance.

Prior to caring for Tai E, Young knew nothing about hospice; another family member made the initial contact. When a counselor at Hospice Hawaii called back, Young says she wept, venting her fears and frustrations to the woman on the phone. “She never cut me short,” Young says. “She listened to me and said, ‘We will help you.’”

And so Young’s relationship with Hospice Hawaii began. “The whole staff was unbelievable,” she says. “It got so personal; they became just like family. They were there for me.”

Hospice is a philosophy of care designed for patients with a life-limiting illness. Typically, this means the patient has a life expectancy of months rather than years, and wants to focus on palliative care, which is comfort-based, rather than curative care. “We believe that death is a natural part of life,” says Joy Yadao, executive director of St. Francis Hospice. “We seek to neither hasten it nor postpone it. As long as the patient and family agree with that philosophy, we can provide the care that’s needed.”

One goal of hospice is to relieve suffering — physically, emotionally, socially and spiritually. But it goes beyond just relieving pain, asserts Kenneth Zeri, president of Hospice Hawaii.

He says, “Hospice care is designed to promote a sense of hope, peace and wellness in the midst of dying, so that people can experience a meaningful ending to their lives. We have a model of care here that’s intensely psychosocial. Ultimately, you have to have the physical care, but the most important part is spiritual, regardless of your faith. How am I connected to this world? What is the purpose of my life? Our hospice program is designed to help people get to that point.”

Rooms at St. Francis Hospice’s Maurice J. Sullivan Family Hospice Center can accommodate family members for overnight stays.

The term “hospice” can be traced back to medieval times, when it referred to a resting place for weary travelers, according to the National Hospice and Palliative Care Organization (NHPCO). Merriam-Webster’s Dictionary now defines it as “a facility or program designed to provide a caring environment for meeting the physical and emotional needs of the terminally ill.” That definition supposedly came about in the 1960s when the first hospice center opened in London. Hospice caught on in the U.S. during the 1970s.

There are two hospices on Oahu, St. Francis Hospice and Hospice Hawaii. St. Francis introduced hospice services in the state in 1978. Hospice Hawaii started the following year. Both offer services such as counseling, bereavement programs, care facilities, community education and financial aid for the uninsured. Both also provide quality, in-home care supervised by a team of professionals consisting of doctors, nurses, social workers, therapists and home health aides. St. Francis Hospice even has a dietician on staff to help with food choices.

These services are not just for the patient. “When we come into the home, we’re looking at the whole family and the whole environment,” says Kendra Epstein, a social worker with Hospice Hawaii. Many times, she discovers the caregiver is not sleeping or eating well. “Physically and mentally, the caregivers are often wiped out,” she says.

Every situation is different, and Epstein adapts her visits to the family’s needs. “Sometimes it’s just offering company in the home,” she says. “Other times it’s family counseling, one-on-one counseling, family problem solving. It varies, but mostly it’s checking in with the family to see what their needs are.”

Epstein and other members of her hospice team worked closely with Young and Tai E. While Epstein provided counseling and guidance, the home health aides came every Monday, Wednesday and Friday to bathe Tai E, change her bedsheets and assist her with personal hygiene. A nurse came once a week to check Tai E’s vital signs, communicate with her doctor and order medications.

One benefit of hospice is respite, which provides the caregiver with a break of up to five days. No medical reason is needed; the caregiver may want to go on a trip or may simply be exhausted. When Young took advantage of this service to travel to the Mainland, Tai E was cared for in Hospice Hawaii’s Kailua home.

Nurse Angelita Fermin chats with a patient at St. Francis Hospice’s Sister Maureen Keleher Center in Nuuanu.

St. Francis Hospice also offers facilities for those who do not have the option of home care. “Hospice is supposed to be a home program,” Yadao says, “and our goal is not to have people leave their home setting, but sometimes that’s not possible.” For such cases, St. Francis Hospice has a 12-bed residence in Nuuanu and a 24-bed facility in Ewa Beach. The atmosphere is homelike, with no set schedules or rigid rules.

“They aren’t anything like a nursing home,” Yadao says. “Our goal is to provide attentive care — getting to know the patient and their family, and being able to respond quickly to their needs. We don’t have any particular visiting hours; families can be here whenever they want to. We want patients to feel comfortable, like it’s their home away from home.” To that end, all meals are made to order, and even pets can visit outside on the patio.

According to Zeri, the average length of stay for a hospice patient is 41 days. He says, “About 25 percent of our patients die within the first week of care, especially when they’re referred very late. This is a shame because we know that we could prevent so much needless suffering.”

If you’re interested in learning about hospice, it’s never too early to call for information. As Nora Uyehara, a nurse with Hospice Hawaii, says, “The earlier the referral, the better our chances are to make this a meaningful experience.”

Young’s story is proof of this. Throughout the hospice process, she became more open to discussing quality of life and thus overcame her fear of death. Two years ago, she couldn’t bear the thought of letting Tai E die. “Now,” she says, “of course I mourn losing her, but I was able let her go peacefully. Hospice Hawaii gave me so much information and knowledge about caregiving. They worked with me to be strong and to take care of myself. They gave me support. I can’t find enough words to commend them.”

Unfortunately, however, most people have misconceptions about hospice. “I think hospice has always been a ‘bad word,’ like it’s the end,” Epstein explains. “My biggest wish is for it to be seen differently because I think hospice can be the beginning — of creating the death you want and knowing we’ll support you.”

For example, she recalls a very sick man who didn’t get out much. Hospice Hawaii provided him with an oxygen tank and a volunteer who took him for drives by the beach. “We can improve the patient’s quality of life,” Epstein says. “It’s not the end.”

Concurs Yadao, “Hospice is not about dying; it’s really about living. It’s about, ‘Hey, what do you want to do with the time you have left? Is there someone you want to talk to, something you wish you’ve done?’”

Often, people want to reconnect with their families and mend broken relationships. “A lot of times an illness can tear a family apart,” Yadao explains. “What we’ve found is with support, people actually can grow closer as a family, either by caring for their loved one or just being in the facility together. It can be a significant time of healing for the patient and for the family.”

Young appreciated the opportunity she had to find closure with her beloved aunt. “I thanked her for the opportunity to take care of her,” she says. “I had that time to give her all that I could. Having her know it and receive it is what I’m really grateful for.”

back to top

© Copyright Generations Hawaii. Designed by Trade Publishing