By Tony Hooker
According to the website Understandhospice.org, the word “hospice” derives from the Latin word hospes, which means both “guest” and “host.” Since the 11th century, the concept of hospice was adopted by the Roman Catholic tradition to refer to a place of hospitality for the sick and dying as well as for travelers and pilgrims. The first of such hospices are believed to have been established during the Crusades. Hospices were widespread in the Middle Ages but diminished as religious orders became dispersed.
In more modern times, Dr. Cicely Saunders established St. Christopher’s hospice in London in 1969, while here in the US, the first hospice was established in 1974 by Patricia Wald in Connecticut. Soon after legislation to fund hospice care was written, and firmly established in 1986. November is national Hospice and Palliative Care Month, so it seemed like a great time to check in with Jennifer Shadwick, who has made a career of providing such care at the company she works with, Harbor Light Hospice.
What is Hospice and Palliative care month?
It’s a chance for everyone to talk about hospice care. It gives everyone a chance for open conversation, because the work is so difficult. It gives everyone an opportunity to educate others about what hospice is.
What is hospice?
Hospice is designed to give support to the primary care giver, and to the patient, for quality and comfort for end of life, when you have a condition that can take your life in six months or less.
Do you reach out to your clients, or do your clients contact you?
We reach out to our clients through education, but in the facilities, homes and hospitals, they have education on hospice as well. Often, your doctor or your facility will recommend it to you. Anyone can recommend the program. It doesn’t have to come from your doctor, but your doctor must agree that your condition could take your life in six months or less.
You work for an organization called Harbor Light Hospice. What can you tell me about them?
We have been in business twenty-five years, and our office is located in Forsyth, near Decatur, but our main hub is in Winfield, near Chicago. We are located in nine states. Even though our office is in Forsyth, we have local teams everywhere! We try to keep our teams of nurses and C.N.A’s local.
Is your focus on the Champaign-Urbana area?
We have seventeen counties. We go from Champaign down to Paris and Taylorville, and over to Danville.
It would seem that with such a large area, that your services would be in great demand?
Yes, we are in demand.
How many people fill your role in this area?
There are four of us. Our job as a Liaison is to educate people about what hospice really is. People feel like hospice is just last days, and that’s what the biggest point of our education is. It’s not always just last days. It can be that, but we can really help support a family through that time, and they’ve generally already paid for the service through Medicare or Medicaid, or even through your private insurance. People wait too long when the service could be very beneficial to the family and the care giver.
Let’s take a couple of steps back here. Where did you go to school?
I went to McKendree University.
How about high school?
St. Joe. (Saint joseph-Ogden)
What did you study in college?
So, this role fits, eh? It seems like it would take a special sort of person to do what you do. Would you agree?
I feel like you have to be called to serve in every hospice. Not that everyone is, but generally they are. Anyone who serves, the Nurses, the C.N.A’s, the volunteers, has to have a “hospice heart” because it is emotional to give yourself to a family and to be able to serve that family to the absolute best of your abilities. They are vulnerable and they don’t understand what’s going on.
Unfortunately, we know what the final outcome is going to be, correct?
Yes, usually. A success story that I like to share when I’m educating is about someone who was on a ventilator and chose to come off of it, when I first started, three years ago. I remember crying all night. I was so upset, the family was upset, the husband was upset, and she’s still alive today! Still using our services and we’ve customized the plan to meet her needs. She’s gotten almost three years of quality of life with her husband, her family and her horses. That’s testimony to me that we just never know. People think that there’s a limit to what hospice is, but as long as you qualify, you can be on it.
What are some of the services that you are able to provide?
Everyone has a certain journey, and we customize it to what the family needs. You have an RN case manager that’s there to support you. You have a C.N.A. who’s there to support you. You have a social worker, a chaplain and volunteers that are there for you, on call twenty-four hours a day. The goal is when you get to a point that you’ve received a diagnosis and chosen not to receive curative treatments or to go the hospital and you want to be comfortable in your own home or where you’ve chosen to live, then these services help you to sustain quality of life. That nurse comes to you and checks to make sure that you’re comfortable and have what you need. The whole goal is so that you don’t have to go to all those appointments because you’re to a point where you just want to be comfortable. When you elect for the program, you’re able to do that. People think that it’s over. We don’t even start medicines that you don’t need yet. People think “Well, I’m on hospice so I’m just going to have morphine and Ativan,” and it’s really not like that. That’s not what it’s meant to do. You can be in our program for three months and not need those medicines. I think that it’s important, because that’s scary to people. The word hospice is frightening, and the thought that they’re going to come in and I’m going to have all these medicines is frightening also. Someone might need that, but not everyone will.
What’s your role? Do you coordinate services?
Yes, Liaisons coordinate everything before the nurse actually comes. We make sure we have everything into the office. We communicate with the family and make sure that they understand what they’re electing. We want to make sure that they understand that this is the right decision for your family. It’s serious and it’s hard. When you hear the word, we’re supposed to call within a couple of hours to educate them, because it is scary when you first hear the word hospice. Our role is to make sure that they’re not stressing or worried. Most people don’t even know that it’s paid for. Most patients and their families don’t know that it often reverts back to traditional Medicare, and the thought of the financial burden is a stress! That’s our role, to put them at ease and to sign all the paperwork. Then we’ll have a nurse come and we’ll keep everyone in communication.
What type of training do you undergo?
We have a full month when we first start where we learn and understand all the roles in hospice. We also have to have a complete understanding of what hospice is. We have to be fully engaged in what it actually means and what we’re actually serving. And then we have to take a test at the end to make sure we actually know what we’re talking about! <laughs> The biggest thing that I want people to understand is that a lot of times, people think that because they’re in a facility, they don’t need the program. It’s so important because you have the patient that you’re loving and taking care of, you have the families that you’re loving and taking care of, and in facilities we just add another layer, because the staff love and take care of these residents and as the patient age and need more support, so do those care givers. We are able to help supplement their levels of care. Every hospice has a beauty. People don’t know they have a choice, and all the hospices have something beautiful. We’re all doing what we’re supposed to do. Every hospice has a goal of assisting with quality of life for the family, and for the patient, foremost. We need to let people know that they do have a choice, and not every hospice is the right fit for the patient. It’s important for you to know your options. We all follow Medicare guidelines, but our philosophies might be different, if that makes sense. I pray that God sends me to the people to help. I don’t worry about what other people do, I worry about what I’m doing and that we’re doing the best job that we can do every day. I try not to think of it as a competition, because people’s lives are stressful. I just want to be there to serve people. That’s my passion. I love serving people, helping guide them through the journey, and each person’s journey is different. It’s important to me to make sure that each person’s unique journey is special.
Is there anything you would like to add? Anything you would like to emphasize?
I would like to emphasize the importance of not waiting to educate yourself about hospice. I wouldn’t know about hospice if I wasn’t doing it, and if I hadn’t been working in assisted living, but I think that the knowledge of what the program does is so powerful. There is no limit of services, we recertify someone around every ninety days. As long as you show that you qualify, you can have the services. I would like to add that every hospice program has a volunteer program, and someone might feel called to do that. You can volunteer an hour a week. You can volunteer two hours a month, but if someone is called to it, it ends up being a blessing to yourself. It’s a beautiful program, and all the hospices need volunteers.