I think angels dwell there
San Diego Hospice care provides a focus on life for the dying
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THE PATIENT’S LOVED ONES are an integral part of hospice care. Indeed, the hospice philosophy recognizes that people who are shepherding someone through a serious or terminal illness desperately need emotional and physical support. The hospice team visits with family members and arranges for volunteers to help the family with routine care. After the patient’s death, bereavement counseling is offered to loved ones for at least one year.
“We work with each patient and the patient’s family on a number of levels—physical, emotional and spiritual,” says Melissa Delacalzada, manager of communications at San Diego Hospice. “But first you have to alleviate the patient’s pain. I think we all know from experience that when you’re in excruciating pain, it’s impossible to focus on anything else.”
Once a patient’s pain is under control, the team approach to hospice care begins in full. Typically, a team is made up of the patient’s personal physician, a hospice physician, nurses, home health aides, social workers, clergy or other counselors, specially trained volunteers and speech, physical and occupational therapists, if needed.
San Diego Hospice offers an HIV/AIDS management program for people of any age on Medi-Cal. There is also a pediatric end-of-life program, a collaboration with Rady Children’s Hospital, that provides compassionate care to infants, children and adolescents with life-threatening illnesses.
In his approach to hospice care, von Gunten stresses the vast complexity of human beings—Shakespeare’s “paragon of animals” who celebrate and grieve, cherish memories and imagine the future, build cathedrals, compose sonnets, create great works of art, dream of mastering the heavens and install drywall.
“There is nothing more complex than a person,” he says. “That’s why we weave together all the aspects of hospice care and palliative care.”
In very general terms, palliative care, also called comfort care, focuses on managing symptoms, relieving pain and improving quality of life, regardless of a patient’s diagnosis. Hospice care—a concept that can be traced to the time-honored practice of offering shelter, or hospitality, to tired or sick travelers on a long journey—provides compassionate care to people at the end stage of life’s journey. It is a form of palliative care for patients with a terminal illness.
The atmosphere inside San Diego Hospice speaks of “home.” The lobby resembles a large family room. There are comfortable couches, stuffed chairs, potted plants, a grand piano and large windows offering panoramic vistas. The hallways are lined with paintings by local artists.
The San Diego Hospice inpatient care center has two wings, each housing 12 private rooms. The rooms are bright, airy and large (450 square feet). In addition to furnishings for the patient, there is a foldout bed in each room—a bid to encourage relatives and friends to stay overnight for as many nights as they wish. Pets are also welcome.
HAVING DISPATCHED ONE MYTH surrounding hospice care—that it is “all about doom and gloom”—von Gunten tackles another popular misconception: that people come to hospice to die.
“The vast majority of our patients are treated in the comfort of their own homes,” he says. The typical stay in the 24-bed inpatient facility is just eight to nine days. With the help of 700 full- and part-time employees and 600 volunteers, San Diego Hospice cares for some 900 patients countywide.
Vailia Dennis is one of those 900.
In her book, Marshall’s Journey, published in 2004, Vailia chronicles her younger brother’s struggle with Alzheimer’s and the heart-wrenching challenges and ultimate rewards of being his sole caregiver. In the first chapter, she describes the day she found Nicky, then five months old, and brought him to the home she was sharing with Marshall.
“Bringing that puppy into our house was the best thing I could have done for my brother,” she writes. “They spent time together, took little walks in our backyard and often napped, with Marshall in the recliner and Nicky on the floor beside his chair. He became Marshall’s only joy and interest.”
Marshall died peacefully on September 29, 2001, a few days after he was admitted to San Diego Hospice. To this day, Vailia says her only regret was that she didn’t reach out and contact the hospice sooner.
“I refused to face the inevitable,” she says of her brother’s illness. “Because of my denial, I didn’t receive the sort of help that would have eased the stresses of our daily life.
“I have no guilt about the way I cared for my brother,” she adds. “I do have guilt about the way I cared for myself.”
Today, San Diego Hospice provides Vailia with a nurse who makes weekly home visits to check her vital signs and gauge her general health. There is also a social worker to help her navigate the bureaucratic thicket of insurance and Medicare forms. A hospice volunteer takes her grocery shopping and drives her to doctors’ appointments. “Anything I need,” she says. Finally, the hospice dispatches a Catholic chaplain to counsel Vailia, who is Jewish.
“A friend of mine asked me why I didn’t request a Jewish chaplain,” she says, her brown eyes sparkling. “I told her, ‘I know everything I need to know about being Jewish. I thought I’d branch out.’ ”
Vailia insists that, as much as she relishes life, she is not afraid of dying. She’s already made all of the necessary arrangements. Contacted the mortuary. Posted a list of people to be called when she dies. There is also a set of instructions for Nicky’s care.
“I’m not at all afraid of death,” she says. And there is a note of amiable acceptance—not resignation—in her voice.
“And I prefer to die alone,” she adds. “Why would I want the image of my dying to overshadow all the wonder of my 87 years?”