Donor's Loss Inspires Leadership: Darlene Shiley's Palliative Care Story
By Margaret Chantung
It’s been five years since Donald Shiley, the biomedical engineer and inventor of the Bjork-Shiley prosthetic heart valve and numerous other medical devices that saved lives, passed away. For his widow, Darlene, time hasn’t eased her loss but it has given her a deeper appreciation for palliative care—healthcare that addresses each patient as a whole person, including his or her physical comfort, confidence, emotional well-being, spirituality and dignity.
"Through his illness, I experienced exactly what it is that Cal State San Marcos is working toward with its new palliative care institute," she said. "There’s an enormous need for that kind of care, not only for those who are afflicted themselves, but for those of us who care for them."
Darlene and Donald, a couple well-regarded in the San Diego region for their philanthropic support to education, health care and the arts, were married in 1978 and considered themselves truly lucky in love. Years later as Donald’s health began to decline, Darlene was determined to provide the best possible care for him in their home.
"I remember Donald was very specific," she recalled. "He said, ‘If you can keep me with you at home, I know I’d really like that.’ I was careful in selecting palliative care professionals, and when it came to the point where he couldn’t discuss his care, I knew what he wanted, which made all the difference in the world. That’s why we say
to discuss these things with your loved one, because the knowing strengthens you. By knowing what he wanted I could make sure that it happened—I called myself his patient advocate."
Her experience loving and caring for Donald through the end of his life is what led her to surprise attendees and organizers with a $1.2 million gift at the launch event for the CSU Institute for Palliative Care at CSUSM in September 2012. The Institute was founded to address the critical shortage of nursing, social work, spiritual and other professionals with palliative care skills and training while also educating the public about the value of palliative care and how to access it.
"I think that people always assume with the palliative care process that the folks come in and they administer to the person who is not well," she reflected. "In fact there could be two people in the room who are not well—the patient and the one that is caring and loving that person. I didn’t have a very good marriage… I had a stupendous marriage. Losing Donald was very, very hard."
Palliative care uses an interdisciplinary team approach to help patients and their families. Teams typically include a physician, nurse, social worker, pharmacist, chaplain and others as needed.
"One morning a gentleman came in and introduced himself as the massage therapist," recalled Darlene. "I said, ‘That’s very nice but I think my husband is past that point.’ And he said, ‘Oh no, I’m here for you, Mrs. Shiley. You seem a little tense and I thought it might be helpful to you.’ I let him massage my hands and I have to tell you it was a moment of calm in this sea of angst and turmoil…it sounds simple but sometimes the beauty of something is its simplicity."
To date, Darlene has given $3 million in support of the CSU Institute for Palliative Care, which has expanded to seven partner CSU campuses across the state.
"Darlene Shiley’s generous support of the Institute for Palliative Care continues to make a profound difference in our ongoing work to reshape the dialogue on palliative care in our country," said CSUSM President Karen Haynes. "As we offer continuing education courses for working professionals, academic curriculum for today’s students and programs to support palliative care awareness in the community, her support is a torch of leadership, truly making a difference."
The Center for Disease Control estimates that about half of all adults in the United States currently have one or more chronic health conditions. With these numbers expected to rise to 90 percent by 2030, there is a real crisis for palliative care-trained healthcare professionals. CSUSM and the CSU Institute for Palliative Care are on the cutting edge, working to ensure that all who can benefit from palliative care in California can access it. Already the Institute has trained more than 1,100 working professionals, 800 current students and 2,200 community members in the principles of palliative care.
"I’m thrilled to be a part of this, I really am," said Darlene. "I’m very happy with what I see and look forward to seeing even more."
I think that people always assume with the palliative care process that the folks come in and they administer to the person who is not well. In fact there could be two people in the room who are not well—the patient and the one that is caring and loving that person.