In 1982, Hospice of the Bluegrass was known as Community Hospice of Lexington. With a staff of five and several dozen volunteers, hospice served eighteen patients in Fayette County.
Today, Hospice of the Bluegrass serves nearly 700 patients in 32 counties with a staff of more than 400 and a volunteer base of nearly 1,000. This growth and expansion has occurred on the watch of Gretchen Brown, regarded as one of the most successful, innovative, and respected leaders of the American hospice movement.
Brown received her bachelor's and master's degrees from UK. She has taught in the UK College of Social Work and presently serves as adjunct faculty in the UK College of Health Sciences. After 32 years as president and CEO of Hospice of the Bluegrass, Brown is retiring.
Tom Martin: Let's go back to 1982 when you were hired to lead hospice. The chairman of the board at the time, Bob Milward, said that you were the right person for the job. What do you think he and other board members saw in you?
Gretchen Brown: I think a couple of things. One is that I had already been the administrator of a fairly large and complex program. I worked at the Bluegrass Mental Health-Mental Retardation Board and I was in charge of the drug program. Also, my mother had had a recent cancer diagnosis. While luckily she was with us for many, many more years, I had experienced what families go through when they don't have anybody to guide them. It was a scary time and I didn't know where to get resources.
Martin: Did you learn from that lack of resources that perhaps there was a future in providing them?
Brown: Yes. And I thought, who needs them more than folks who are facing death or their family members who are grieving and upset and not always thinking their best? It's a very stressful time.
Tom: When you arrived at the Hospice, did you then envision the need to expand into other counties or did that come later on?
Brown: That came a little bit later on and really for two reasons. One, Community Hospice of Lexington just served the metro area. So that was frustrating; we had so many neighbors we couldn't care for. And secondly, because I've worked at the Bluegrass Regional Mental Health-Mental Retardation Board, I was used to giving regional services. So, it wasn't a new concept to serve a broader area.
Martin: I would think that expanding such a complex structure would be pretty challenging, especially over such a broad area.
Brown: The most challenging thing — because hospice is a 24-hour a day, seven days a week service often done with an on-call nurse — was getting on-call personnel for those various regions. That was the most difficult part and remains very challenging today.
Martin: You began with hospice in 1982 and only four years later you were instrumental in helping to add hospice care as a Medicaid benefit. What has resulted?
Brown: The really important thing is that folks that were indigent began to get the same services that everybody else did. Hospice has a very comprehensive set of services. Not only does it pay the staff that goes out and visits in the patient's home — nurses, social workers, chaplains, personal care aides that do some light homemaking and also personal care such as baths, shampooing people's hair and that kind of thing — it pays for all their drugs related to terminal illness, their supplies, any kind of medical supplies, and durable medical equipment.
Often those folks may be less well-educated and less able to figure out how to solve these problems on their own. So, it's a tremendous service for those folks, as well as the elderly.
Martin: It sounds to me as if this service has to do with dignity.
Brown: Right. That's what hospice is really about: letting folks that are going through this determine how they want the end of their life to be. It's not like we have a set agenda. We have a box of tools, particularly in pain and symptom management and also in teaching family members and others how to care for the patient. The biggest thing that people fear is losing control of their body. So we try to mitigate that by acting as guides and talking about what may have worked for others so that they continue to be able to make those choices. One of the things we've learned is that people don't actually change. They keep their sense of humor and their intellect usually and are able to be themselves if they can stay home and be surrounded by their family and their pets and things that they love.
Martin: Any message to business owners about the value of understanding what an employee might be going through in this period in their lives?
Brown: People should realize what a stressful situation it is. Of course it greatly helps that the Family Medical Leave Act passed, so employers of a certain size are obligated to let people off work to take care of their loved ones. But understanding how stressed people are, how they may need to patch together care and be gone a few hours or run out and check on somebody or make phone calls is important.
The other thing that hospice has contributed to how we think about death and dying is that when the patient has died the family members' problems may just be beginning. Grief is a powerful emotion. Grief is very debilitating. The three-day bereavement leave is really not bereavement leave, it's really funeral leave, it's all about making arrangements. But grief can last a much longer time and people may need a little leeway during that period as well.
Martin: Have we become better equipped to come to grips with the end of life?
Brown: I think in some ways we are. We talk about it. People used to whisper about cancer and death or dying. The way we practice medicine has really changed. There is a lot more involvement in patients' rights and patients' need to know. And people talk about living wills.
Those are the kinds of things that patients and families need to discuss before the crisis arrives. It's what dying people and families need to think about: to say goodbye; to say I forgive you, I love you, I'm sorry. It's not helpful if it's too late in the illness for you to do those things. So, we still struggle to get patients referred in a timely manner where they can get the full benefit of, you know, the end of their days.
Martin: A prestigious award has been created in your name: the Kentucky Association for Hospice and Palliative Care "Gretchen M. Brown Lifetime Achievement Award." And you were its first recipient, cited as "a true champion for hospice care of the dying and their families and for your passion for end-of-life care." What has driven your passion for this work?
Brown: Well, having been trained as a social worker in the '70s I've had an activist streak. When I started there were not many resources for dying people. People that wanted to stay home were discouraged from staying home, so being able to advocate for them has really made the difference. I'm still very passionate about the service that we offer and the need for it may indeed be increasing and may need to adapt to the new families that we are taking care of now.
Martin: Many who hear about hospice care might imagine daily work among those who are dying to be pretty difficult, to say the least. How do professionals in the field balance protecting yourselves from becoming emotionally involved while at the same time providing sensitive, thoughtful care?
Brown: People are always saying, you know, "Oh, you work with hospice? How do you do that?" The way I'd like to think about it is, we are not responsible for the problem. We don't make people sick. They come to us and it's such a privilege to be able to make life better for them and their families by giving them the resources: that Medicare benefit, the counseling, the support, the 24-hour backup, helping them plan how they want the remaining days to be.
So, we don't really find it depressing. That doesn't mean it's not sad when people die — it is, of course. But the fact that you have made the experience not a terrible painful one, is very gratifying. I can't count the number of times that people have talked about what a wonderful time of their life it was to be with someone they love that was dying.