Kathy Black is the Hartford Geriatric Social Work Faculty Scholar at the University of South Florida at Sarasota-Manatee. She earned her Ph.D. at the University at Albany in New York and holds masters degrees in social work, public health and gerontology. Passionate and enthusiastic about empowering people as they get older, she has written a number of articles and contributed to studies locally, including “Aging With Dignity and Independence,” in conjunction with The Patterson Foundation and SCOPE (Sarasota County Openly Plans for Excellence). Correspondent Chris Angermann interviewed her at her office at USF.
Q: How did you become so passionate about gerontology?
A: I cared for my grandmother for 10 years. Everything I do is in honor of her. In high school, I explored nursing and thought I wanted to become a mental health nurse. Then I spent one summer working at a nursing home and loved it.
Q: What is your area of specialty?
A: A big part of my professional work has been focused on advance planning for health care decisions and for care throughout the end of life, but it has since expanded to include planning for social and environmental conditions: How will I manage as I age? Who will take care of me if I can’t take care of myself? Do I need to relocate? What will happen if I have a stroke and am laid up? Another important part is finances. By the time adults are in their 80s, more than half will have cognitive impairment, which is why I became interested in preventing fraud in this community. It is very prevalent in older communities, especially in Florida. So my work has expanded to the totality of life, not just health planning.
Q: What do you consider the essence of your work?
A: It’s about empowerment. I want older people to know what's coming. We know the trajectory of decline that leads to the end of life. Joanne Lynne, an MD and geriatrician, has identified three trajectories that cover nine out of 10 Americans. About 20 percent maintain their usual health and then, in a period from a few weeks to about 18 months, experience decline leading to death, with cancer being the most common cause. Then there are about 25 percent who will suffer an exacerbation of two conditions – chronic heart failure or emphysema (COPD). They’ll go to the hospital, come back, never quite return to the same capacity, go back in again, and at some point decline rather suddenly, dying from chronic organ system failure. This group lives generally into the 70s. The third group, about 40 percent, will have long-term dwindling – frailty and dementia – requiring years of personal care. That’s why, Lynne says, “The end of life must be understood as a period that typically spans years not just weeks or months.”
Q: So what are the implications for older adults?
A: What we’ve found in our surveys is that most people didn’t anticipate living this long. But people who plan in advance will be in a better position to make sure the rest of their life falls in place the way they would like it to be. The last thing we want is to coerce people towards the end of life. But if they are not mentally or physically able, someone else must step in, and it then becomes somebody else’s plan, and they are doomed to an existence they may not like. Going into an assisted living facility is voluntary, but when you’ve had multiple hospitalizations and it’s unsafe for you to go home, now you have utilization issues. They want to get you out of the hospital, you’re no longer acutely ill, Medicare is threatening to stop paying, and you’ve got to take the first bed available, but you didn’t get your name on a waiting list or check the place out yourself.
Q: Don’t most people want to stay in their home?
A: Yes. But people need to think ahead of time about how their home is going to work for them. So they need ramps, widen their doorways. What happens if they fall? We did a survey and found that less than 1 percent of the 200 people who participated have concrete plans for aging in place. Further, we found that the people most in need of those plans – people with deteriorating health – were least likely to plan ahead. We also found that a lot of people thought that their friends or neighbors would care for them. Many people think privately that their kids will take care of them. But if you’re 90 years old, your kids are going to be 60 or 70, and sometimes these adult children have their own health problems. And of the current baby boomers, 20 percent never married, have no kids or are divorced. They’re going to be on their own.
Q: Is there a silver lining to aging?
A: Yes. People also need to plan for the beautiful aspects of getting older – the greater emotional depth, the wisdom and creativity. All of these things flourish in older age, and many people are now giving expression to them. When we asked older people what dignity meant to them, what matters most to them, it turned out that it was maintaining their health, their lifestyle and their current level of activity. We also asked what kind of things are most meaningful for them and found that for some it is more introspective, for others more outwardly focused. There’s a growing body of evidence about the myriad of benefits of volunteering – cognitive enhancement, social engagement, better physical health. But many people told us that when they did volunteer, they either wanted to make use of their lifelong skills or discover new interests and passions. Above all, they want to do what is meaningful work to them. They also want to be acknowledged. They’re rarely given credit for their work, but status and recognition go a long way.
Q: What do you think we have to work on from a big picture perspective?
A: As a society, we are shockingly death aversive. I don’t think we have done a good enough job in helping people cope with some of the inevitabilities in life – widowhood, the loss of friends. By acknowledging the inevitable decline that will come with aging, we can do a great deal more to take a positive view of some things we have traditionally assumed to be negative and give people a lot more meaning toward the end of their life.