Interview with Jennifer Carlson, RN, CHPN
Jennifer Carlson is the Director of Operations at Amedisys Hospice Services of Sweetwater (in Sweetwater, TN).
Q. How did you get involved with hospice nursing?
A. I was a nurse in a hospital setting about 20 years ago, working with cancer patients who were going through chemotherapy. I got to know many of those patients well, and of course while some survived, many died. I began to want to move out of a hospital setting, and realized I was drawn to hospice work; I had been nurturing people who were facing the end of life, even before I worked in hospice.
I worked as a nurse at Capital Hospice, in the DC area, for about 17 years. I have been in my current position for 2 years, and am in a more administrative role. But I still provide hands-on care, and serve on-call. I see this as a great opportunity to keep my own skills current, and also to see first-hand that our processes are working to best support our team.
Q. The area your hospice serves is primarily rural. How has that affected your work?
A. Staffing is definitely an issue in rural hospices; positions are harder to fill and may stay open longer, so everyone else does have to pitch in! But I have found that once people join a staff, they stay much longer.
The issue of geography is tremendous. The area we serve takes 2 hours to drive from one end to the other, and it’s almost all rural roads. So taking a job here requires the ability and willingness to travel.
Q. What are some of the other challenges that face rural hospices?
A. One of the biggest challenges I am finding is that the community in general here is less familiar with the concept of hospice. And by community I don’t just mean consumers; I also am finding that is true with physicians. So in addition to providing care, a large component of our work is trying to educate and change perceptions about what hospice care can offer.
Many physicians have been a part of this community for a long time, and do not offer hospice as a healthcare option to their patients, or there is a tendency to still tell patients that “you don’t need hospice” Unfortunately we still get a lot of referrals in the last days or hours of someone’s life.
In addition to educating healthcare professionals, we are also going directly into the community, hoping to create advocates who will ask their physicians about hospice as an option. Many churches have been open to our presentations, as have civic clubs in a large retirement community in our area. In the last month we had two self-referrals, so we are already seeing this process work.
Q. How do you get into these communities?
A. In rural areas, there is a great sense of connectedness. We have staff who are members of these churches and civic groups. And for many, it is generational—their families have been members of the church, or their father was a member of this club before them. That sense of connectedness makes a real difference in how we are able to educate people about hospice care.
Q. In addition to your work with Amedisys Hospice, you are also serving as a staff consultant to HFA, providing support services and answering questions. What sort of questions are the most common?
A. Well, many of them are what are often called “myths” about hospice, although we are trying to move away from that word, as it has many negative connotations.
One aspect of hospice that almost always surprises people is that hospice does not require a person to have a Do Not Resuscitate (DNR) before being admitted. Likewise, people often seem surprised that they can go back to the hospital for acute care (not aggressive care.) These issues seem to be very important to people, and understanding that they still have options can be very reassuring.
And having that support in their home, developing that trusting relationship, is critical. The world opens up for these families to make the hard decisions that come with end of life, when they have this kind of unconditional support and choices about their care.
People are also shocked that they’ve had this benefit all along—that Medicare and Medicaid covers the care, and that there isn’t even a co-pay!
Q. HFA’s LWG program this year is focusing on Spirituality and End-of-Life Care. What role does spirituality play in your community and in your services?
A. We are blessed to have a wonderful chaplain on our staff, who is also a pastor of a small church, and his work sets a wonderful example for how to provide spiritual support to people facing the end of life. He has an amazing way of establishing trust, without ever passing judgment. He provides an opportunity for someone to speak without being judged, and helps both patients and families understand that part of hospice care is an openness to getting them whatever support they need.
In our rural community, religion is a strong part of the lifestyle. Most people I’ve worked with don’t question what happens after death; but they will often have questions about what happens between now and then, and all of our staff are prepared to help them explore those questions, which really are spiritual in nature. In a purely anecdotal way, I have found that people with the strongest faith—however that is defined for each person-- tend to have the most peaceful death.
Q. What are some of the spiritual concerns or issues that you hear about, and how do hospice professionals help patients cope with those concerns?
A. When someone is facing a terminal illness and declining, they may get messages from family, friends, or even church members, that “you just weren’t praying hard enough.” Our role as hospice professionals is never to judge or disregard this sentiment, but to really listen. Sometimes I’ve found that a way to talk about this concern, even with pastors and physicians, is to talk about the power of prayer, and talk about what that prayer might be for. When someone is facing illness and death, the prayer may be for hope or peace, not for cure.
Q. What can hospices do organizationally to support staff spiritually?
A. I believe that all people who work in hospice, no matter if you answer phones or care for patients at the bedside, have some inherent sense of spirituality that allows them to work with the dying. Some may be deeply religious, in a traditional sense, and some may have a more personal sense of spirituality. It is important to recognize the spiritual side of working with patients at the end of their lives and to nurture staff’s spiritual needs.
It is essential to educate staff on different belief systems. Especially in a smaller area, staff must be open to understanding a person’s belief system or lifestyle that may differ from their own, and can never be allowed to judge anyone else’s choices. Education is always the first step to ensuring good care, and this must happen on an ongoing basis. If a certain staff member is uncomfortable in a particular patient situation, education can often be what helps to work that out. We always want to do the best we can to provide the care that patients need, while always supporting staff at the same time.
