Haven in Hospice: Care for End of Life
A close look at Torrance Memorial Hospice provides an understanding of a nationwide movement to accommodate and dignify the end of life.
It was young love when Bob and Bobby Barker first met on a date in October of 1945. She was just 20 years old, and he a 21-year-old in the Navy. Bobby, now 86, recalled the thrill of their early days together.
“He had this tremendous sense of humor…” she said in the living room of the couple’s Palos Verdes residence within earshot of Bob’s bedroom, where he was fast asleep. “The rest was history.”
They got married the following June in Bobby’s home church in Pennsylvania. Honeymoon festivities took place in Williamsburg, Virginia. Together, the couple cultivated a storybook life. They had three boys and a girl, and in 1966, relocated to the West Coast.
When Bob was diagnosed with pulmonary heart disease about three years ago, he became bedridden and had to be hooked to an oxygen machine. A subsequent bout with pneumonia slowly diminished the muscles on his arms and face, which took away his ability to speak comprehensibly.
After nearly 66 years together, Bobby is slowly losing her husband.
“It’s so sad to see him not be the person he used to be,” she admitted. “He has very little energy and that’s very hard.”
Despite her own health problems, she became his primary caretaker, staying by his bedside at their Palos Verdes residence.
“I felt like Cinderella,” Bobby recalled. “I had to be home by a certain time or else… it was so limiting.”
Things have significantly changed since Bob’s doctor referred the family to Torrance Memorial Medical Center’s Hospice Care more than a year ago. At the urging of hospice staff, Bobby hired four caretakers to look after her husband around the clock. When there is a change in his medical condition at any given time, the caretakers call the hospice, which immediately sends a nurse or physician to evaluate him and provide proper medical treatment.
With the extra – and familiar – hands on deck, Bobby now gets to focus on being Bob’s loving wife.
“Now I don’t do very much caretaking,” she said. “I go and sit with him and be with him when he’s awake.”
For the first time in three years, Bobby let her kids whisk her away on a 30-year traditional family trip to Catalina Island in May.
“I knew Bob was in good hands,” she said.
History of hospice
In medieval times, the term “hospice” described a place of shelter and rest for weary or ill travelers on a long journey. In the 1960s, British physician Cicely Saunders assigned a new definition to the term by introducing the idea of modern day hospice, a model that focuses on comfort rather than a cure for terminally ill patients.
A hospice would provide medical care, pain management and emotional and spiritual support for a person nearing the end of his or her life. And it would tend to the corresponding needs of spouses and families facing the impending loss of a loved one.
In 1967, Saunders established the first modern day hospice, St. Christopher’s Hospice, in a residential suburb in London.
The movement is growing in the United States. With more than 5,300 hospice programs now operating nationwide, an estimated 1.65 million patients received hospice care in 2011, according to National Hospice & Palliative Care Organization (NHPCO). NHPCO estimates that roughly 44.6 percent of all deaths in 2011 were under the care of a hospice program.
Though generally operating under a common mission, hospice programs in the U.S. vary greatly in size, type and tax status. The majority of hospices are independent, freestanding agencies, while the remaining programs are either part of a hospital system, a home health agency or a nursing home. In size, hospices range from small, all-volunteer agencies to large nationwide corporations. A majority of hospices are for-profit, while the rest are not-for-profit and government-owned.
The Medicare Hospice Benefit, enacted by Congress in 1982, fully covers hospice care for terminally-ill patients of any prognosis, if certified by their doctors that they have six months or less to live. Many programs, like Torrance Memorial Hospice, also accept Medicaid and optional benefits provided by private insurance companies.
“Hospices are popping up everywhere – the whole movement is growing,” noted Theresa Ferry, Torrance Memorial Hospice’s program administrator. “People hear stories and those stories travel by word of mouth. These families have these great experiences and they tell their neighbors and friends, and so now when we approach people about hospice, they’ll say things like, ‘Oh, I had a friend or a sister who did that.’ And they’re not afraid anymore.”
The conference room of Torrance Memorial Hospice becomes very crowded every Thursday.
More than 20 staff members involved in every facet of patient care – including two physicians, a team of nurses, home health aides, physical and occupational therapists, a chaplain, a bereavement counselor, social workers and sometimes volunteers – file around the table and elaborately discuss the status of each patient and his or her family.
“It really gets to be each person sharing their own expertise,” said Dr. James McKinnell, the program’s medical director. “It’s not me doing the medical thing and the counselor doing their thing independently. We talk about everything from family dynamics to medical needs and all the different bits and pieces in the care plan.”
This shared interdisciplinary teamwork is unique to hospice, McKinnell explained, adding, “If I see a patient in the hospital, I just walk into the room. I don’t sit down and have a conversation with the nurses,” he said. “Whereas with hospice, for example, the chaplain would come in and share that this patient is having a complete existential meltdown. So that means my conversation with the patient about their medical needs is going to evolve and change.”
That communication is key to the state-of-the-art network of care provided by Torrance Memorial’s hospice program. Founded in 1983, the program is a non-profit community organization that serves the South Bay.
In the last four years alone, the program has grown tremendously, noted Theresa Ferry, program administrator. When Ferry first arrived at Torrance Memorial in 2008, the hospice program was serving about 12 to 13 patients. Today, its census lists up to 60 patients, admitting an average of 20 a month. The program also prides itself in a notably long average length of stay: four to five months, compared to the national average of roughly two months.
Like most hospice programs, Torrance Memorial Hospice provides its services in the comfort of the patient’s home.
“Now it’s not that patients come in to die,” Ferry said. “Patients are coming to have a great end of life.”
For one patient, that “great end” was a long anticipated trip to Las Vegas, Ferry recalled with a smile. The staff contacted a hospice agency near where the patient was staying and set up an arrangement by which the patient could receive treatment or care during the trip. In addition, the patient was provided with all necessary equipment before departure, such as an oxygen machine and emergency pain medication.
“I do remember everyone was so thrilled for them that they got to go,” Ferry said, laughing. “We wanted to know if they were winning.”
This is an industry-wide practice and one of the benefits of hospice as opposed to other end-of-life treatment options.
“Patients have gone on trips with their family and friends … and they’re allowed to do that, unlike Medicare home health where the patient has to be homebound,” Ferry said. “They don’t want that, and neither do we.”
Giving and receiving
Sue Morgan, who is 79 years old, has been volunteering at Torrance Memorial Hospice Care for nearly a decade. One particular event sticks out in her mind when reflecting on her experience.
Years ago, she paid a home visit to a patient in Rolling Hills.
“He said, ‘Okay, we’re gonna go and sit in my garage,’” she recalled. “He had a couple chairs set up; the garage was open and it was a beautiful day.”
He then took out a few peanuts in a shell and threw them out on the driveway. Bluebirds emerged out of nowhere, picked up the peanut and took off.
“And we just spent that afternoon throwing peanuts out, and the bluebirds just kept coming back for them,” Morgan said. “It was a very touching experience to have him do that, to show me.”
Volunteers wear many different hats within a hospice program – from providing bereavement services to paying home visits to tackling administrative tasks. They also play a critical role in the financial framework of hospice care: volunteers must account for at least 5 percent of total care hours performed by paid hospice staff for the patient to apply Medicare benefits to the program.
Volunteers also go through elaborate training and orientation.
Torrance Memorial Hospice has about 50 volunteers, a handful of whom are currently inactive, said Amanda Goodrich, the program’s volunteer coordinator.
A majority has a specific placement within the program. Visiting volunteers, like Morgan, accompany patients in their homes for about two hours, freeing up some necessary time and space for their family members or caregivers. Bereavement volunteers place calls to families who’ve experienced loss, providing support and counseling and tracking their progress for up to a year. Some even facilitate bereavement support groups, held twice a week at Torrance Memorial Health Conference Center.
The “tuck-in” program is the most recent addition to volunteer-led efforts. Every Thursday after the interdisciplinary team meeting, “tuck-in” volunteers call every patient in the program’s census to check whether he or she is running low on any medical supplies for the weekend or have any other concerns.
“All of this gets notated down and it gets addressed immediately,” Goodrich said. “It’s a nice level of touch for the volunteers to let the family know that we’re here for them. The feedback we get from the caregivers has been tremendous.”
Some volunteers know what it’s like to be on the other end. Many have gone through their own personal loss.
When Goodrich’s husband was diagnosed with colon cancer more than a decade ago, she resigned from her job at South Bay Hospital to take care of him full-time. He died after a hard-fought battle spanning seven years, leaving behind their 16-year-old daughter and 10-year-old son.
Now as volunteer coordinator at Torrance Memorial Hospice – she is always looking for more volunteers – Goodrich visits the Barker family once a week.
“Bobby has shared some very personal things that I can at least offer her a perspective on upon my own personal experience,” Goodrich said. “I’m able to identify and I can let her know that.”
Volunteers who are able to identify with the patient, whether it is a shared experience or a cultural background, can make all the difference, McKinnell noted.
In one case, a Japanese patient known for being taciturn was paired up with a Japanese-speaking volunteer.
“The volunteer comes in and all of a sudden, she’s all nattering and gossiping and sharing the most vibrant times,” McKinnell recalled.
Though hospice volunteers come from a variety of backgrounds, they share a basic characteristic.
“They’re people who care about other people – people who pitch in and try to help,” Morgan said. “I have lots of people who ask me, ‘How can you do that?’ I don’t know how to answer that. It’s just something that makes me feel good, and I feel good if I can make someone else feel a little happier with their lives. As long as I can do it, I will.”
From physical to spiritual
Tenzin Kiyosaki, the chaplain at Torrance Memorial Hospice, has plenty of experience accommodating various backgrounds, particularly in faith. One of her first patients was a Muslim woman who didn’t speak English, so Kiyosaki mulled over how she could help.
“Her daughter was not so involved in the faith as the mother was, so I went onto the Internet and Googled the Koran and found translated passages that related to women’s issues and passing away,” she recalled.
The daughter was then able to locate those passages in the actual Koran and read them to her mother.
“Sometimes I have to be a little creative,” Kiyosaki said. “A lot of it is about being open in an interfaith, nondenominational way.”
Kiyosaki, who sees six to 15 patients by request every week, said much of her work is helping the dying individual reach a peace of mind in facing the end of life.
“Many people get consumed in trying to settle the physical issues,” she said. “But the heart is hurting, sometimes in fear, sometimes in denial.”
One patient, she recalled, told her that she believed there was nothing at the end of life. Yet, she still wanted to see the chaplain. However, every time Kiyosaki began to speak, all she did was scream.
“So I just sat quietly,” she said, laughing.
Kiyosaki continued working with her for many months.
“She began reminiscing about how proud she is about her son and her life and the things she loved,” the chaplain said. “Sometimes I don’t get that close with a patient because they don’t want to see a chaplain. I’m optional.”
She often alludes to Dr. Ira Byock’s “Four Things That Matter Most,” which emphasizes articulating the following to one’s loved ones: “Please forgive me”; “I forgive you”; “Thank you” and “I love you.” This has opened up many heartfelt conversations between family members and tied up loose ends, she said.
“Some people are very connected with their faith tradition, and some are not connected with a specific faith. But I think we all have issues of the inner heart and spirit, and that’s where I go with people.”
“Close your eyes. Take a deep breath. Breathe in love, exhale peace. Call to mind your loved one.”
Kiyosaki’s soft-spoken voice penetrated the thick silence at the Health Conference Center of Torrance Memorial on the evening of Nov. 11. It was Torrance Memorial Hospice’s 17th annual “Light Up a Life” event, a tree lighting ceremony in celebration of love and remembrance.
For the first time ever, the event was at full capacity, with more than 300 attendees. Friends and family members lit up their tea light candles as the names of their loved ones were called. By the end of the list, the entire conference room was glowing in an orange hue.
“Before, it was more structured with speeches from doctors. But I realized that we don’t want another memorial service; it should be more celebratory,” Ferry said. “So we changed the whole face of the event beginning last year.”
The poignant evening ended with hors d’oeuvres, wine and a performance of The Nutcracker by the San Pedro City Ballet.
In family we trust
Dr. McKinnell, who has been treating Bob Barker since he came on hospice more than a year ago, has a framed photograph of the couple in his office.
“It was the one day last year when he actually got out of bed and was in a wheelchair. It was the day his childhood friend showed up,” he remembered.
People would ask McKinnell who the elderly couple was, and he said that he’d respond – only half jokingly – that they were his grandparents.
“They have sort of been my adoptive grandparents …” he said. “The fact that Bobby could trust us, it’s a bit intense because oftentimes I get the same feelings back.”
Bobby announced that she will be taking another trip at the end of this year.
“We are all going up to my son’s in Oakland for New Years,” she said, resolutely. “I already got my plane reservations and I’m going.”
But she’ll be with her husband of 66 years for Christmas, his favorite holiday.