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HQI PFAC Member Advocates for Patient Rights and Caregiver Support

April 9, 2019

Kay Laughton’s passion for patient, provider and caregiver relationships makes her an effective member of the Patient and Family Advisory Council (PFAC) at Health Quality Innovators (HQI). She brings her experience as a caretaker to the council and is doing her part to make sure that caregivers receive the help they need, and that patients receive the respect, they deserve.

A retired Navy Rear Admiral, Kay was a group Vice President for a large company when her husband was diagnosed with Alzheimer’s disease. “It was a big change to go from a professional role to a caregiver role,” she said. “It is not an easy thing to be a caregiver and I realized that I needed help. People need to understand that caregivers need support too and that is part of what the PFAC is advocating for.”

Kay also became the caregiver for her mother and sister-in law. She moved her mother from California to Washington, D.C. to live at the Virginian, a senior living community in Fairfax, VA – formerly the Continuing Care Retirement Community (CCRC). She visited her two to three times a week and then transitioned her to the Charles County Nursing and Rehab Center. Kay was there every day and became the first chair of its foundation board.

“Dealing with my mother in the nursing home environment was difficult. My mother was very sharp and mentally aware and just needed physical care. I felt my mother needed to be in an assisted living facility, but I couldn’t afford it,” she said.

These financial issues led her to advocate for people who would thrive in an assisted living facility. “We need to keep someone who is vital and active in assisted living instead of a nursing home.”

Recognizing the need to better understand caregiver needs, she joined the Maryland Area Council on Aging, where she served from 1999-2005. “I felt I could take my professional experience, coupled with my experience with my husband, mother and sister-in-law and help people by advocating for caregivers and patients,” said Kay.

Kay has now lived at Collington (a CCRC in Maryland) for eight years. During her time, she has served on the board of directors for six years. This experience has taught her that the industry is changing dramatically with baby boomers. “They are more demanding and active than previous generations. They want to know how to keep themselves healthy. They want to know what questions to ask their providers,” Kay said.

With her experience on the Maryland Area Council on Aging and the board at Collington, a friend recommended Kay to serve on HQI’s PFAC. “Through the council I have learned a lot about health care issues. This knowledge has helped in my personal life, as well as with my leadership position at Collington,” said Kay. “I am now an advocate at Collington and that is because of the PFAC. I would not have known about certain health care issues unless I learned it from HQI.”

Kay is a huge proponent for being proactive in your own health care as well as your family’s. She really began to understand this when her daughter was diagnosed with brain cancer. “The doctor may understand the physical needs of the patient surrounding the illness, but they don’t always take into consideration the psychological issues that are affecting not only the patient, but their family. Three years ago, when I lost my daughter to brain cancer, the family wasn’t being considered and we should have been. The clinician must realize the extent to which the patient and family want to engage,” Kay said.

Kay is currently leading a palliative care group at Collington that investigates issues dealing with end of life care. “We understand that sometimes you can’t fix someone, but you can provide them with support and make it easy for that individual to talk about their fears and wishes.” The group aims to help patients communicate these fears and wishes to their family and provider so that they can consider the quality of life for that patient.

Kay has embraced new opportunities and grown as a member of the PFAC. Through participating in council meetings, speaking on webinars and attending HQI meetings – such as the November Care Transitions educational session – she has spoken up as a caregiver and helped providers consider the entire family, not just the medical needs of the patient.

The PFAC empowers members, informs HQI’s work and gives members a path to give back to their communities, all while fostering increased communication related to health care decisions. “We are giving HQI information that can help influence changes in health care and influence the Centers for Medicare & Medicaid Services (CMS) policy,” says Kay.

Besides encouraging some of her peers to join the PFAC, Kay also wants to help them learn to communicate with health care providers and advocate for themselves and their family members. “This committee gives me the opportunity to share information with my peers that they may not know. I have gained a greater sense of compassion that I wouldn’t have had if I wasn’t a part of the PFAC and other councils. I hope I can stay on the PFAC for an extended period of time. We have a lot of work to do.”

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