A History of Hospice: Dr. Doris Howell, ‘the mother of hospice’ in San Diego, addresses La Jolla Woman’s Club

Wearing a pale seafoam green suit, and standing just under 5 feet tall, 93-year-old Dr. Doris Howell, the founder of San Diego Hospice, walked slowly to the podium at La Jolla Woman’s Club on May 11 to give a speech as guest of the club’s Women in Leadership series.

To a quiet crowd of more than 50 attendees, Howell told how a woman, dressed head to toe in navy blue, was instrumental in pushing her to bring hospice care to San Diego. But she opened her speech with, surprisingly, an apology.

Howell said she was sorry that her presentation would be given in pieces by three people, because one week ago, she had a heart attack and knew she wouldn’t have the energy to give the entire speech herself.

“Today is a special day for me, even if I am in a condition I wasn’t expecting to be in,” she said. “Some of you know I have lost some of my mobility in the last 10 years … but on May 2, my cousin and I had lunch and she noticed I was acting peculiar, well, more peculiar than usual. She watched me and listened to me try to talk, and called 911.”

Howell said she did not have the typical symptoms of a heart attack, just difficulty moving, which she attributed to her ongoing lessening in mobility, but her cousin saw otherwise, and sent her off in an ambulance.

She joked that though she could normally talk at the drop of a hat, “I must not have brought the right hat today.”

Assisting in the lecture, Howell Foundation chair Carole Banka said with degrees from universities in the United States and Canada in pediatrics and hematology (the study of blood and blood diseases), Dr. Howell chaired the UCSD Department of Community and Family Medicine for five years, before returning to the Pediatrics Department. In the course of her work, she found that though the standards in the departments for which she worked were high, there was something missing – hospice care for families and children. So 40 years ago, she began her exploration into the program.

Howell said, “I gathered other pediatric doctors in town and asked if they thought their patients would benefit from hospice care, but many didn’t know what that was. I explained to the extent of my knowledge what it was, and they asked how they would implement it? I told them I was a pediatrician just like they were, and we don’t do that. We treat the disease not the child fighting it. But we need to. They were very unhappy with me, so I closed the meeting with no success.”

Seeking more information about hospice, which had a presence in other parts of the world, but not yet in San Diego, Howell reached out to those in the medical community. But her greatest wealth of information came from an unexpected source – a neighbor.

“My neighbor called me one day asking for help, and told me he had a lady physician friend from England coming to visit and he wanted to know what to do with a lady physician? So I said, ‘What would you do with any lady? Talk to her!’ He said he didn’t know what to talk about and asked me if I would take her to lunch,” she said. The “lady physician” was Cicely Saunders, creator of one of the first hospice centers in England.

“When she arrived, she was dressed in navy blue, from the top of her hat to her stockings. She was over 6 feet tall, and I felt diminished,” Howell reminisced. “She knew a lot about hospice, but I did not feel profoundly educated. As the afternoon wore on, I showed my ignorance and she waxed prolific about it and had me wrapped around her fingers.”

By the end of the lunch, Howell said, Saunders (who was later made a Dame by the Queen of England) asked her to assist in a talk she was giving, by showing slides.

“I took the slides from her. She said they were paired slides, with a slide 1 and slide 2 for each patient (18 in total) that was admitted to St. Christopher’s Hospice in England. I picked up the first slide, and it was of a patient who was morbid looking, stretched out and wrapped in a white sheet. She told me the first slide showed the patient upon admission to the hospital. I thought it couldn’t be admission, he looks like he’s going out the door!

“The second slide showed the same patient, holding a cocktail glass, sitting on his bed in a colorful robe, in a room with a curtain and bedspread, and I thought this had to be the slide of the patient upon admittance. So we argued for a while about the order of the slides. It turned out the picture of the patient looking happy was on the day of his death,” she said. “I was speechless.”

Motivated, she started out small with a group of nurses in the 1970s to open a hospice center for all ages. That same decade, San Diego Hospice Hospital was established in Hillcrest.

“It had to be started by nurses, they are the ones closest to patients and who know the patient’s needs, what they’re getting and not getting. So it was a natural marriage to reach out to them for a hospice program.”

Growing steadily, San Diego hospice centers moved from empty storefronts and houses to medical centers. In 1982, a bill was passed to include hospice care for six months under Medicare.

But in 2012, a government audit found that hospice was caring for patients beyond the limit of six months, and the program went bankrupt, said Cheryl Wilson of St. Paul’s Senior Services (who had taken over for Howell at the microphone).

“San Diego Hospice closed because there is a narrow window of care … and after six months, the patient must be dis-enrolled, and the hospice team couldn’t deal with that. So they would keep the patients on. There was an audit of the hospice program and insurers found that’s what was happening, so they cut funding. I didn’t like it, but if I’m taking money from the piper, I have to dance to his tune,” Wilson said.

The silver lining though, was that Scripps Health purchased the Hospice Hospital in 2013. Further, 24 hospice centers, as well as in-home options, have opened up across the county for those with terminal illnesses.

To provide assistance past six months, Howell established San Diego Hospice and Palliative Care.

“Palliative care,” Wilson explained, “means we are going to meet your needs where you are at this point, and we are going to be with you at your last point. That’s something hospice can’t do, because care might be needed for two years, based on the illness. Doris knew this was the right thing to do because she had seen all the good hospice does for those in their last six months of life.”

Reflecting on events, Howell said, “I thought hospice had a future here. Certainly a future that would outlive me, but it’s a learning experience, and I hope that San Diego Hospice can return one day.”

Banka reported that since the establishment of Palliative Care in San Diego, UCSD hospital established the Doris Howell Palliative Care Service, and last November, Rady Children’s Hospital followed suit.

With many relating to experiences with having loved ones in hospice care, audience-members shared stories following the event, and called Dr. Howell, “inspirational” and “strong.”

Mithu Sherin, president of the La Jolla Woman’s Club, said the club’s next speaker series would focus on women in science, with presenters and program dates to be determined.