After spending countless hours at his mother's bedside in the intensive care unit at Stanford Hospital, Esteban Manriquez sought out a quiet spot where he could rest and recharge.
He found it at the Frank Family Resource Center on the hospital's third floor, a peaceful refuge and a source of support and information to nurture those caring for loved ones.
"After more than a week here, you begin to feel trapped," said Manriquez, whose mother was recuperating from a liver transplant. "It was awesome to go the resource center, where I could lie down on a couch or go out on the patio to enjoy the sun and outdoors. It was tremendous." And, he added, the health librarian was so helpful, providing useful information on liver disease.
He said family members have often met up at the center during breaks to chat, read, pray or distract themselves by watching some sports on TV.
"It has helped strengthen our family's resolve. It's been a blessing for us," he said.
It has helped strengthen our family's resolve. It's been a blessing for us.
Esteban Manriquez
The hospital launched the resource center five years ago -- with the opening of the new hospital -- as part of its ongoing effort to maintain its focus on patient's needs and experience, and by extension, the needs of their caregivers.
"At Stanford, we take care of complex patients. And because of that complexity, their recovery is often supported by a loved one or family member," said Alpa Vyas, senior vice president and chief patient experience officer at Stanford Medicine. "The success for that patient doesn't stop when they leave the four walls of the hospital. It continues at home. So family members become a part of the extended care team."
If those family caregivers do well, so do the patients, she said. "When we support caregivers, patients experience better outcomes."
Tools for the patient, their caregivers
When the new hospital opened, it introduced a plethora of new services and resources to enable patients to focus on their healing and recovery. Bedside art programs, visits from cuddly canines, live concerts and interpreter services all are designed to ease the experience. There are hospital navigators to assist with clinic appointments and physician searches.
The hospital also debuted a new MyHealth app, accessible at the bedside, from which patients can track important aspects of their care: medications, test results, procedure timelines, information about the clinical team, and steps to discharge. Having this information readily available can help relieve patients' stress and anxiety, as they can easily monitor the progress of their care.
The entire third floor was designed around the theme of wellness, incorporating a meditative space, chapel, inspiring artwork, four acres of meandering gardens and expansive views of the foothills.
The space is home to the two key programs of the Family Resource Center - the Caregiver Program and the Stanford Health Library -- where caregivers can obtain emotional and practical support, as well as information to help manage a family member's care.
The Caregiver Program offers peer support from trained staff who have had the experienced the struggles of being caregivers themselves, often having shepherded loved ones through the last stages of their lives.
Charisse Lee, a health consultant with the program, now spends her days walking through the infusion bays at the cancer center or in the neurology unit, connecting with people who might need a sympathetic ear, a referral to a support group or help finding local housing and transportation.
"I just want them to know we are here to support. I have literally sat in that chair and we are here to offer help,'" said Lee, who has been a caregiver. "It's amazing how people will open up. One woman told me, 'I'm really struggling with getting him to eat or getting meals on the table.' We troubleshoot. I might suggest a meal prep service to lighten the burden."
I just want them to know we are here to support. I have literally sat in that chair and we are here to offer help.
Charisse Lee
"I get phone calls and inquiries of all sorts," she added. "For example, a man recently called to tell me his wife had a troubling diagnosis and he was struggling on how to tell the kids. I picked up the phone, and we talked for a while, and I helped coach him through the process."
Enabling care from near and far
The program, which was introduced with the opening of the new hospital, went on hiatus during the COVID pandemic and is now back in operation.
Lee also initiated a popular program allowing family members who live far away to send personal greeting cards to ailing loved ones in the hospital. Anyone can access the cards online, selecting from seven different designs and penning their own personal message to the patient. James Liu, the medical librarian, then prints them out and hand-delivers them to patients. (In April, he delivered more than 500 cards.)
Manriquez, who has relatives in Chile and other distant countries, said more than 40 people had written cards to his mother. Liu prepared a binder of the notes to present to her in the intensive care unit.
"The greeting cards have been amazing," Manriquez said.
Liu also fields calls, emails and in-person inquiries from people seeking information about a variety of medical subjects, helping them find "reliable and trustworthy information, instead of relying on 'Dr. Google.'"
That's important, because when it comes to medical treatment, information is power, said Vyas, the patient experience officer.
Information is the least expensive intervention we have in helping patients and families manage their care.
Alpa Vyas
"Information is the least expensive intervention we have in helping patients and families manage their care," she said. "If patients understand what is happening, they feel empowered to make decisions and ask questions, which enables them to stick to their plan of care because they understand the 'why' behind it. And they can also be better advocates for themselves -- or the caregiver can be a better advocate for them."
The MyHealth app also arms family members with information, as they can obtain proxy access to it, with the patient's approval. "If you have a loved one who can't physically be with you, they can still keep up with what's happening while you are receiving care," she said. "It is one of the helpful things we tried to consider in thinking about how to design the experience for both the patient and the family."
As for the future, Vyas said the hospital is continuing to cultivate a culture of empathy, compassion, equity and inclusion, benefitting both patients and providers. It continues to work on improving access, navigation and communication so patients and families are well-guided during their healthcare journey. And it is developing a technologically advanced system for measuring patients' needs, which could lead to care that is more personalized and holistic, she said.
"These strategies aim not only to advance patient care locally, but also set a standard that can be adopted more broadly," she said.
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