Near-Death Experience Leads to a a Lifetime of Caring for the Dying

The 68-year-old man who was dying of cancer wanted Edith Santangelo to understand he had changed.

For almost three months, Santangelo sat in his home and listened to him explain how he had gone from valuing work to valuing what he had contributed to others’ lives.

As executive director of Camarillo Hospice, Santangelo believes one of the most important things you can do for a dying person is listen.

“It’s important they feel they are still exercising some control over the process,” said Santangelo, 53. “By listening to them and trying to understand them, in a sense, you are empowering them because there’s very little they can really do for themselves at that point.”

Unlike a traditional hospice, which provides a place for people to die, the Camarillo Hospice has no facility of its own. Instead the organization has sent out volunteers since 1978 to minister to the emotional, psychological and spiritual needs of people and their families who are facing a life-threatening illness.

The volunteers provide no medical care, so the organization receives no reimbursement from insurance companies or health maintenance organizations. Nor do the patients pay for their care.

*

Instead, the nonprofit organization receives nearly 40% of its $160,000 budget from donations, $16,000 from United Way and the rest from miscellaneous grants.

Camarillo Hospice will accept donations through Jan. 9 for its 12th annual Tree of Life fund-raiser. Those of $15 or more will be represented by a light on the Tree of Life in Constitution Park, next to Camarillo City Hall. For more information, call 389-5898.

The Camarillo Hospice also depends on the work of 175 volunteers, 32 of whom support about 30 patients and families each month by offering respite care, visitation, transportation and emotional support.

Listening, however, is one of the most important things they do.

It was the 68-year-old man who taught this to Santangelo almost 12 years ago when she first began at the Camarillo Hospice as a volunteer.

“He’d make sure I was listening to everything he was telling me,” she said. “I’d go back the next time and he would ask me questions [about prior conversations]. It got to the point where I was taking notes.”

Those notes formed a kind of diary Santangelo was able to pass on to one of the man’s daughters when he died.

*

“He taught me how to listen rather than feel that I constantly had to be doing something,” she said.

It was an experience 13 years before she came to the Camarillo Hospice that would finally lead Santangelo into the field of working with the dying.

When she was 29, Santangelo almost died.

An asthmatic attack brought her to the emergency room of a Pittsburgh hospital where Santangelo was given a medication with a preservative in it that caused her to have an allergic reaction.

Her heart stopped beating; she was unable to breathe.

“I didn’t have any of the white lights and didn’t see any of my relatives welcoming me into heaven or anything like that,” she said.

But what did happen remains vivid--even 25 years later.

“All of a sudden I was above my body, I could hear what was being said around me,” Santangelo said.

Her children were 2 and 4 at the time. Her husband was a surgical resident at the University of Pittsburgh Hospital who came to her aid.

“I heard my husband say ‘I think she’s getting worse,’ but then I remember thinking that I’m coming back,” she said. “Then I felt my self back in my body. I felt my heart beating again. It was very strange.”

*

Santangelo was also in medical school, but quit shortly after her experience to spend more time with her family.

The fear of dying followed her for years. It followed her to Ventura County where, from 1978 to 1986, she taught biology, chemistry and physical science at Villanova Preparatory School in Ojai and microbiology at Ventura College.

However, Santangelo decided in 1986 to return to school to earn a master’s degree in marriage and family counseling. While attending classes at Cal Lutheran University and teaching part time at the California Youth Authority’s Ventura School, she decided to volunteer at Camarillo Hospice.

“I thought if I could spend time with someone in the process of actually dying that it would help ease some of my fears,” she said.

Santangelo had provided patient care for only eight months when she was asked to volunteer on the board of directors. Soon she was named vice president and then president. It was still a volunteer position, but now she was involved with fund-raising and setting policy.

*

Although Santangelo assisted with fund-raising and setting policy for the nonprofit organization, she still helped the dying and bereaved through a private counseling practice she set up after receiving her master’s degree in 1988.

Santangelo cut back her practice more than two years ago, however, when she took the 30-hours-per-week position of executive director at Camarillo Hospice.

“The first issue we finally came to terms with first is that we would stay true to the volunteer tradition,” she said. “We wanted to be able to say ‘yes’ to anyone in need and not worry about HMOs and Medicare reimbursements.”

Those who work with Santangelo characterize her as compassionate, focused and intelligent and willing to give of her life.

“She sees the whole picture and is able to explain it to people,” said volunteer Anita McDermott, who has also been Santangelo’s friend for 20 years.

Volunteers say Santangelo has made the community more aware of Camarillo Hospice since becoming executive director.

*

“The hospice is very important to her and that shows in everything she does,” volunteer Sandy Nirenberg said. Among other achievements, “community awareness has really increased since she took over,” Nirenberg said.

In fact, Santangelo has ambitious plans for the future: a traditional hospice facility where people could come to die.

“It has come full circle because that’s how hospices started in the 70s,” Santangelo said.

“It would be for people who don’t have a primary caregiver or have a frail primary caregiver,” she said, adding that there is a great need in the community for a traditional hospice.

“All you have to do is walk through a nursing home and see all of the people in bed, close to death and all alone,” Santangelo said.