by Gail M. Rink, MSW, executive director of Hospice of Santa Barbara, Inc.
As I stood by her bedside in the intensive care unit, those familiar, curious contradictions came over me. How can Alice Heath be dying? Death ends a life forever. Her life was so vital. She seemed just fine to me when I visited her several weeks ago. What happened? Where did the time go? Why is she in the ICU? She needs to be in her room at Vista del Monte. I should’ve gone to see her more frequently. Death is never routine. Alice Heath taught me that well.
I met Alice in 1974. She was starting Hospice of Santa Barbara, Inc. I was beginning the Community Resources Information Service. Alice wanted to know what services existed on the South Coast to serve the dying and bereaved. Not many, I told her.
I knew about her hospice project. I had read in the local news the opposition she was encountering from the medical community. Alice’s original vision for hospice was a place for the dying that expanded medical care for the terminally ill to include emotional, social, and spiritual care for both patients and their families. She sought the endorsement of the S.B. County Medical Society. Her request was denied. Most doctors opposed the facility idea, believing there were “enough empty beds already in town.” In addition, physicians believed a British concept could never work in the U.S. Undaunted, Alice visited the St. Christopher’s Hospice in London and returned determined to adapt the hospice concept to a Santa Barbara model.
I met with Alice for the second time after her return from London. She had an idea. “We need an intensive education campaign to tell the principal caregivers — doctors, nurses, social workers, ministers, and families — what hospice is.” A great idea from an experienced public health educator. Discuss dying in public forums? Wow! I volunteered to talk about community resources — a topic I knew; a safe topic.
Alice’s education campaign was bold. She was the tenacious visionary taking the unpopular and very personal topics of dying, suffering, caring, and sorrow to the public. She challenged the definition of pain at life’s end. Pain is physical, emotional, social, and spiritual. Pain should be treated with more than medications; it is also relieved by conversation, companionship, and spiritual support. Alice championed the partnering of trained lay volunteers with health professionals. Her tenacious plan paid off. Hospice of Santa Barbara is the second oldest hospice in the U.S., celebrating 32 years of service to the community.
For me, Alice was the consummate educator. She had intellect, experience, style, and courage. It was the “how” she taught, as much as the “what,” that left the lasting legacy for me and all my colleagues who work to improve the quality of life for the dying and bereaved. We learned that care for the dying is about psychological and spiritual help for the dying patient and his/her family. We learned that all facets of human suffering have to be healed. Alice Heath championed care of the family as much as she did care for the dying patient.
Alice was soft-spoken. From time to time, she had to raise her voice to be heard. But it was that wide mouth of hers, accentuated at times by a broad, twinkling smile, that was my downfall. Alice, with silent patience, would wait for me to understand what she meant, what she wanted, and how things were going to be — always with that smile patiently glowing back at me. My solace was in watching her perpetrate the same move on others in committee meetings, at City Council, with the Board of Supervisors. Eventually, I realized Alice knew exactly what was needed for the greater good. Her ideas were wise, compassionate, and pioneering. After all, she championed the very concept of living comfortably until you die.
She had a sense of humor, too. It helped to balance her tenacity. One sunny, summer afternoon, I drove Alice to an AIDS fundraising event. I picked her up in my ’93 Sunbird convertible, hoisted her wheelchair in the backseat, and drove to Carpinteria. It was clearly a top-down day. I’m a fast driver. I love the warm wind in my face. Alice seemed to enjoy it, too. When I returned her home, she politely thanked me for the drive and said, “I’m not sure if that was a quality-of-life adventure, or a near-death experience.”
Having established Hospice of Santa Barbara, Alice turned to opening another of society’s closets. The beginning of the AIDS epidemic was an extraordinary time — thousands of men, women, and children infected with a lethal disease. Alice envisioned a residence for the dying. Heath House was to be a home, one where men and women with AIDS could live in an environment infused with friendships, families, familiarities, and hope for a better tomorrow. Again, Alice persevered through the community’s defenses and fears.
Alice was the mentor. She practiced what she taught. I participated in the extraordinary unfolding of Heath House, the first residential facility in Santa Barbara for HIV and AIDS patients. What happened at Heath House is the story of Alice putting into practice what she taught and what she believed. Alice Heath understood what it means to truly care for others.
She educated us about AIDS. She held community meetings. She wrote letters to the editor. She modeled confidence. She lessened our contagious fears. And always, that broad, twinkling smile was patiently glowing back at us. We believed her. And she did it. Heath House opened in 1991. With a homey atmosphere, meals cooked in the kitchen, a garden in the yard, a sun porch, and a stained-glass window in the lower bathroom, it was a place where men and women with AIDS could truly live until they died; a place where families shared the care of their dying sons, daughters, mothers, fathers, siblings, friends, and lovers; a place where our human connections flourished.
I was blessed to be a part of the life of Heath House. I learned that love is tangible. I learned that caring heals our human wounds. I learned that a friendly, sincere presence is enough. I learned to accept death as a natural part of life. And I learned that a person of vision and courage can improve the quality of life for us all.
On the day Alice died, I walked into the ICU. Friends and colleagues were at her bedside. She seemed agitated. I walked toward her and stroked her arm. And in the softest tones I could voice, I said my goodbye. “You face the ultimate mystery now, Alice. I know you’ll be curious about what’s ahead. Thanks for all you’ve left for us. I am forever grateful for all you’ve given me. Rest. Rest. You are all you need to be.”
Alice Heath died peacefully. I trust she knows the difference she made in my life. Death ends a life, not a legacy.
A memorial service for Alice Heath will be held on June 22 at 10 a.m. at the First Congregational Church, United Church of Christ.