Samira Beckwith found her life’s passion lurking under the mortal threat of cancer. Beckwith was a graduate student at Ohio State University when she was diagnosed with Hodgkin’s disease, cancer of the lymph system. She underwent treatment for the next three years, getting increasingly frustrated with a medical establishment that seemed more interested in the disease than the person fighting it.

While still a student, Beckwith began volunteering with a hospice committee. Once she had earned her master’s degree, she began working in the field full-time.

For the last 15 years, she’s been the president and CEO of Hope of Southwest Florida and has seen the organization grow exponentially.

When Beckwith arrived in 1991, the organization served 50 people daily in their own homes. Today, it serves almost 1,000 people daily in their own homes and in three free-standing hospice houses. The newest – Joanne’s House in Bonita Springs – opened in October. The growth isn’t stopping. The organization is now pursuing state approval for an adult day-care center for the frail elderly who wouldn’t normally be served by hospice.

I was one of those volunteers in the late 70’s who wanted to change the way the health-care system cared for people at the end of life. I met a lot of people who were not as fortunate as me and who did not survive their disease. Watching the care that they received and the care that I was receiving,and hearing about hospice in this country at the time, I remember thinking that there needed to be something better for people
when they weren’t going to be cured. It was the same time that hospice was being developed in this country, and I became very interested in hospice. I started going to committee meetings to start hospice and providing
counseling for people with cancer and looking for ways to improve the quality of life for people.

Hospice is a small community across the country, and I heard of the job being open. I followed up and was one of five people interviewed for the position. I thought, ‘What a beautiful community.’ I didn’t realize at the time how much growth was going to be happening. I really didn’t have a sense of that. They gave me the grand tour, you know, the ‘Move Here Tour’ – take you to the beach, take you to Sanibel and Captiva and hope you see a dolphin as you go over the bridge and decide to move here.

I’ve always been a person – no matter where I am – I want to do the best I can. I want to enjoy the people who are there and the surroundings. You can’t wait until later to enjoy yourself. You can’t wait until later to be happy with who you are and what you are doing. I think that is one of the lessons I learned with having Hodgkin’s disease. The lesson of how important each day is and the lesson of how we have to enjoy each day and how fragile life is. So, I enjoyed North Dakota. I enjoyed Ohio, and I have enjoyed Florida.

It was all in-home care and it was a rented space that was, gosh, maybe the space of my office now. When I came, they used my office as a medical supply storage as well as my office. My office had medical equipment as well as my desk and my chair. We had 50 patients a day we were caring for and about 30 staff members. Now we are caring for about 950 to 1,000 patients a day.

It’s not the growth in the population. It’s the work that our staff is doing about increasing the awareness of what Hospice care truly is and how we can help people.

Some people still think hospice is only for people with cancer, but hospice is for people with all diseases and of all ages. Some people think hospice is only available for the Medicare-eligible people. There are a lot of misconceptions about the diseases and the ages. We take care of babies, and we have 15 children on service on any one day. Many people are in their 30’s, 40’s and 50’s.

I think it will be another generation or two generations from now before people are really comfortable talking about end-of-life care. It’s easy to talk in the abstract for those people over there – everyone should have an advance directive, everybody should talk to their parents about what they want. It’s easy to talk about it for everybody else, but it is different to do it for yourself.

When I go to the luncheon, someone might say, ‘Don’t talk to Samira, she might talk about death and dying’ or ‘I don’t want to be talking to you because you might be recruiting patients.’ Those jokes are really a reflection of the discomfort with the topic. So, I just smile and say to some of them, ‘Oh, we’ll get you later.’ I know it’s not because I’m not charming or fun to be around.

There are many similarities, but I also believe there are some differences. One difference is that our constituency or our stockholders – the people we are responsible to – are the community members. That is the major difference. We are responsible to everyone in this community who has end-of-life care needs and that turns out to be everybody. If it is not for themselves, it is for a family member.

We have a Cancer Society that does great work. The Heart Association does great work. The ALS Association, the Alzheimer’s Association. We are for all of those people. Our mission is to provide excellence for end-of-life care for all of those people and their families. It’s a pretty big mission, and I think that is the difference.

We also have to operate, as an organization, from a business model without losing the essence of our not-for-profit mission. Sometimes it gets challenging. It’s not challenging to not lose the essence of our mission.
That part is easy. The difficult part comes with the business side of it because all of our staff has to pay their mortgages and take care of their families.

In some ways, that’s how we are different from a for-profit business because we don’t set our prices. Our cost of delivering care is the cost, but how much we are reimbursed is set by Medicare – set by the government – or set by the insurance companies. That’s a challenge.

It takes people who like to have that special communication and enjoy listening to a patient. It’s not about talking. It’s about listening. We think about each patient as a person who actually has many dimensions to the care that they need. They have the physical dimension, they have the spiritual, the emotional, the practical

Every person we take care of has a story. They have a story they would like to talk about and maybe preserve for their family members. That’s why it is so important that we recognize them as the person they are and not the patient that the health care system has tried to turn them into. When we get them from the health care system, we go back to treating them as a person and their family, too.

It’s one of the saddest times for families, as well as the person who is at the end of life. If somebody has had a great life and then they had a bad death, it is really hard for the family to forget that and to remember all the good times. They are just focusing on the bad death, and there is no excuse for a bad death.

I started at the very beginning of hospice. I sat at many bedsides with patients and talked with many family members. I understand, firsthand, what the mission is and what the challenges are that go along with the very important work that we do.

That is one reason why 1 have been able to be successful as CEO of the organization. I’m very comfortable with patients and families, although I rarely get to talk to them anymore. I could spend my whole day walking around the Hospice House talking to patients and families and for me that would be very rewarding, and I would enjoy it, but it’s not my job.

The other reason is that I am very passionate about the work that we do. I have been able to build my business skills because we wouldn’t be here if we weren’t also operating like a business. The bank still wants to be paid. I learned many (business skills) growing with hospice. I took a lot of courses in public administration. I would have also had a master’s in public administration if I hadn’t gotten sick because I was in a dual program. After I got sick, I just wanted to graduate with my master’s degree.

Over the years, I have sought out mentors, and have sought out courses that would be helpful to me, and I still do that. Anyone who thinks they know everything about a topic is really mistaken.

I read novels. I’m not a very athletic person. I’ve tried to golf, and I’ve tried to run and my knees wouldn’t hold up. I try to dabble a little bit with exercise and read and enjoy my family and enjoy my friends.

Much of what hospice care has demonstrated is being incorporated into medical care. For example, hospice houses are very home-like, and I believe that hospitals are now trying to be very home-like and involve the family more in care, and I think those changes came from the early days of hospice. It’s not just about the person as a patient, but it’s about the family.

I think pain management has changed because of hospice. The focus on caring for people in pain and controlling their symptoms comes from the early days of hospice. When I was a patient with cancer, it was difficult to get pain medicine. In the early days, it was routine in a hospital to ask for your pain medicine and they would say, ‘Excuse me, your four hours aren’t up,’ and they wouldn’t get you more medicine. Now, with what we have learned about controlling pain in hospice, now when you are a surgical patient in a hospital, they have self-administered morphine pumps so that the patient can give themselves some medicine
without even having to ask, within controls so that people aren’t being over-medicated.

Those are changes that I think were learned in hospice that have been translated into everyday care in hospitals.

For our organization, it has been moving forward, continuing to provide access to care for the people who are entitled to it and deserve to have access. We’ve never sat back and said, ‘Oh, we did a good job with this group of people,’ We have continued to search out how to take care of more people. When people need us, they need us today.

It is really sad when somebody says, ‘I wish I had known about hospice.’ What has driven us is providing access to care for all people who are entitled and deserve to have hospice care. It’s access with quality.
Fifteen years ago, when I came here, I said our goals are going to be access, quality and being good stewards to our resources. We have never changed those goals, but we continued to look at activities
that will help us reach those goals. We understand our mission and, I think that when I came, there wasn’t an understanding of that and that is what I brought to the organization.