As the coordinator for palliative care, one of my primary responsibilities is to contact patients and families who are not eligible for hospice care but have a chronic, debilitating illness. I explain our palliative services and offer them the opportunity to enroll.
I hear many stories in my conversations. Many times, it is the caregiver (usually a family member) who is calling us for help. I always ask, “What are the patient’s goals for their quality of life?” With that, I am able to explain how our services can help the family meet those goals. Often, they are so relieved that we can help them, they burst into cheers and tears of joy.
I have had families tell me, “I wish I had known about this sooner,” and “I’m so glad that I’m finally getting help!” The bond with the families and our staff begins with the conversations I have with them. I give them understanding by listening. I let them cry on the phone with me. I give them time to think and ask questions.
I even work with outside resources, such as physician offices and hospitals, explaining what we do and how we help patients with all different kinds of illnesses, from ALS to kidney failure to cancer.
Compassion starts with the first contact. It doesn’t matter if they use our services or not. They will have a lasting impression of an organization that really cares about what happens to them.
The caregivers I speak with are usually so strung out and all over the place, it’s hard for them to focus. I usually have to repeat the program details more than once, but that’s OK. I don’t mind doing it. I had a patient family member cry on the phone because she has to work full time, take care of three children, and she has limited resources to care for her parents. After we talked, she said she felt like there was finally someone to help her.
It’s not enough that we just support the caregivers, but that we help them detach from that caregiving role, even if it’s just for a little while. I have had family members ask me to come to their home just to meet me, which is such an honor.
The best part happens when the team goes out to visit patients — the nurse, social worker and CNA. Our staff does such a wonderful job working with our patients, and sometimes navigating difficult family dynamics.
We have referred many patients back to our hospice services, which is also a relief to the families because they didn’t have to go through that process without support. Hospice can be a scary word to our patients, but when we let them know that it doesn’t necessarily mean immediate death, it means getting intensive support at home and allowing the patient to have the best quality of life possible, it helps them get over the hump, so to speak. Sometimes, they still hesitate, and we just have to be patient and compassionate.
People have asked me how we are different from home health. That’s a great question. I let them know that we are there for the long term, we are specialists in palliative care, and our nurses are trained to identify when a patient may need to be referred to hospice.
We take care of the caregiver and the patient as one, whereas a home health agency will come in and only do what their order tells them to do. We also offer volunteer support, which is different from home health. The real difference is that we care. We provide support to the family as a whole.
I am proud to help spread the word about Hosparus Health’s palliative care serves, and I am proud that my work can make a real difference in the lives of the people I speak to every day.