When you think of a ‘social worker,’ you may envision the standard client/professional relationship, often as a means to assist in working out some emotional or other life issue via discussions in a hospital, government agency, or office visit setting.
However, most social workers wear many hats, are an integral part of client or patient care, and are also deeply involved in a variety of other activities and functions that are geared to providing support through a potpourri of methods.
A social worker that specializes in hospice care is a testament to that multi-faceted definition. It’s the very reason I chose to undertake additional training and pursue this occupation. I’ve always loved keeping busy and being challenged by the need to multitask. I feel I was called to serve the community at a young age; having a close family member struggling with a rare form of cancer and ultimately passing away at home while in hospice care cemented my resolve to one day enter the field.
I’ve always felt that a caring heart and a true desire to ease another person’s burden were the keys to success and happiness. Watching the hospice team work with my family member, seeing those principles applied and the subsequent beneficial effect on my family would lift my spirits and ensured me that all hurdles in life can be overcome or resolved, no matter how difficult. It is with that spirit that I undertake each and every day as a hospice social worker.
I’m affiliated with an inpatient hospice facility that also has a home hospice division, so my day often takes me to a variety of care settings. I’m also on 24-hour call three days a week, which means I could be called into work or assist a client at any time, day or night. My schedule is set in advance but changes frequently; I often have appointments added or the location of appointments altered at the last minute.
Today begins with an early breakfast at the hospice care facility. My daily routine must remain flexible to provide the best care to my clients. I’ve learned to integrate daily essentials, like meals, rest, and exercise, into my busy day. Breakfast is simple; yogurt and toast. It’s just enough to give me a jump start to the day without feeling overfull. It’s never a good idea to have a heavy meal when you know you will be really active…which I am almost all the time!
I often have small meal breaks at the hospice facility with other social worker colleagues. We have a large cafeteria and there are several a la carte items, saving time and keeping my budget under control. It’s also most convenient since I do spend so much of my time here. Following my breakfast, I stop at the nurse’s station on the third floor to review a new client’s chart. This client was previously a home hospice care client but needed additional assistance with pain control so has been admitted. Here, the physician and hospice care team will evaluate all of the client’s needs and will provide the most well-rounded care possible. In Room 312, I find my client, sitting up but looking pale. His wife is also here and she smiles at me, even though I can tell she’s scared.
I begin my visit by doing my best to connect with the client and do an initial brief visual assessment. Any conversation is also evaluated in real time to determine if the client is oriented to his surroundings appropriately. He states he has been placed on a morphine pump, and that his pain is being better controlled. He’s weary of this battle and has lost a great deal of weight. His eyes tell a story that no words can express.
I review the basic medical data in his chart and see that overall, he is doing as well as can be expected. As the disease progresses, his symptoms will continue to change and may increase in severity. He is expected to pass within the next few months and might return home after his pain medications are stabilized. Hospice care is always fluid; the care changes as often as needed and is always tailored to each individual client. Adhering to this mantra means that the client is reevaluated frequently. Changes to the care team are made to increase the client’s quality of life each time it’s warranted.
Still in Room 312, my client, his wife, and I sit down to talk about any concerns that they might have. My client expresses he’s tired, and just wants to sleep. This is not rare in hospice clients, as medications and progression of their disease often cause fatigue. Depression, anxiety, and other emotional concerns are also often to blame for declining energy. Even in clients with long-standing disease, it can be a bitter, difficult pill to swallow to be told that their journey is ending. There is often confusion and hope that something miraculous and curative might happen. In this case, my client truly appears as if he is exhausted from the process.
More concerning is his wife’s blank expression. We then leave the room to allow her husband to get some rest. I ask her if she is getting enough sleep, and if she is eating regularly. A spouse often goes through such grief at a spouse’s terminal diagnosis that they exhibit depressive symptoms as well. She tells me she’s sleeping and eating little, and has racing thoughts in her mind. She states she just can’t stop thinking about her home, and how lonely she will be there after her husband dies. She’s afraid for him, and also afraid of her future without him. I listen to her concerns and remind her that the hospice care team will be here for her even after her husband passes. Hospice often provides supportive care and grief counseling for the immediate family for six months to one year after the client passes away. I convince her to schedule a checkup with her primary care doctor so that we can be sure her symptoms aren’t from any medical cause, and then schedule a group conference with the grief counselor to talk through some of her fears. Although she is tearful, she is appreciative and thanks me for my concern.
This interaction is a perfect example of why hospice care is so important. The care is for the client, of course, but it is also equally as important for the spouse or family members closest to the client. Caregivers are part of the hospice care team. To be effective and successful; every member of the team needs to be as healthy as possible. Caregivers that are medically or emotionally in need may struggle to care for their loved ones. Taking the time to listen and respond thoughtfully to someone in need is a way to connect, gain trust, and help them heal.
An average appointment in the hospice inpatient facility is usually between 45 minutes to an hour and a half long. My second inpatient visit is at 10 am; after a quick bathroom break, I’m off to Room 326. This is a true assessment appointment; a new client admitted last night in rapid decline. Unlike my first appointment, I don’t have a preexisting relationship with the family from any home hospice setting. This will be our first introduction and we will have a lot of ground to cover in this meeting. A quick chart review reveals that the only Caregiver noted is a neighbor who looks in on the client from time to time. The client was transferred here from the Metro Hospital after being transported by ambulance. In the Emergency Department, it was found from prior hospital records that the client had been diagnosed with Parkinson’s disease and stomach cancer about 18 months ago.
I knock on the door and hear a soft voice say, “Come in.” I open the door into the dimly lit room to find a tiny wisp of a man alone inside. His tremors from Parkinson’s are obvious, and he is very pale and ashen. He’s receiving oxygen through a nasal cannula, and I also notice he is on intravenous antibiotics as well as morphine for pain. He told me he thought he had the flu, but had no improvement and continued to feel worse last week. Feeling short of breath, he had called his physician. After having a phone conference, the physician’s office summoned Emergency Medical Service to his home for transport and evaluation at the local hospital. The Emergency Room physician immediately ordered blood work and radiology, and the client was told shortly thereafter that he was suffering from a serious kidney infection and that his stomach cancer had appeared to have spread to his lungs and spine. Although this client had received several rounds of chemotherapy after his initial diagnosis, followed by surgery and radiation, he was never declared to be in full remission. Understanding the gravity of his situation, he declined further invasive treatment and has been treated symptomatically for the last several months.
This Gentleman is aware he is nearing the end of his journey and simply wants to talk for a short while. He tells me he had been doing as well as could be expected until just a few weeks ago when he felt he came down with a flu-like illness. His symptoms were actually caused by bacterial infection; most likely a simple urinary tract infection was the originating point. With his weakened immune system, the bacteria were able to reproduce quickly and invade many of his organ systems. He states he knows he should have called his physician sooner, but was fearful that he would end up hospitalized. He tells me that his wife passed away about 3 years ago, and he has lived alone ever since. They never had any children and the only extended family left is several states away. It seems as if he had just accepted that he would pass away at home alone.
Although he says he is grateful that his breathing is less labored and his pain is lessened, it’s clear he doesn’t want to be here. We talk about his options for home hospice care and I explain the concept of a hospice team. He understands that as long as he agrees to receive the care, we can provide him with everything he needs, including nursing, medications, supplies, and home support for meal preparation and housekeeping. He has some legal concerns about his property, and I explain that we have volunteer paralegals and attorneys that are better suited for his questions. I put in an electronic order requesting a visit from the legal team as soon as possible. Following our conversation, he is more relaxed and feels more comfortable with the coming days. I will assist in facilitating a transfer to home hospice care as soon as his condition permits; I will visit him again tomorrow morning and be there for his discharge.
Sometimes the best outcome is simply to provide some level of emotional relief for the client. In-depth visits such as this, where we help the client ‘connect the final dots’ in their life and ensure that their end of life choices are honored, are invaluable. Every visit is different, but the same values of professionalism, compassion, love and respect remain constant.
Next up on my schedule is what is referred to as an ‘Administrative Session.’ This is a term that really means ‘catch up on paperwork, phone calls and email responses.’ Each day, I spend one to two hours completing administrative tasks in order to keep my clients’ needs addressed. This time commitment also helps to ensure that there are enough volunteer and support staff for the current number of Clients under my charge.
This afternoon our facility is hosting a volunteer appreciation celebration. It’s a small token of appreciation that the facility provides each quarter for any non-paid contributor to the hospice teams. Each volunteer receives a lapel pin, a gift card, and is individually recognized by the Director of the facility. Any clinical staff that would like to attend or speak is encouraged to do so, and it’s common for another staff member to share a story highlighting the volunteer’s efforts and caring spirit.
I’ll do my best to be back at the facility to attend the celebration, but I’m headed to visit a home care client first. When I arrive at the client’s home, just a few blocks away, I’m greeted by multiple family members. I’m ushered into the sitting room where we all have a seat and I listen as each shares detail about my client: how her appetite was this week, how much she has been talking, how much she is sleeping, and other details that I pull together like a jigsaw of daily events. This informal relation of observations is critical to providing great hospice care. The family and friends closest to the client are best suited to notice subtle changes that a clinician may easily overlook. By evaluating these observations, I can determine if a client may need to be assessed by one of the therapists or physicians, or if the client needs more support staff at home.
This exchange represents about half of the home visit. I then pay personal attention to my client, and take note of any changes obvious to me since I last saw her. We do some basic cognitive assessments; basic command and response type exercises. She speaks very little and is weak, but smiles often. Her home chart is then reviewed and I add a brief synopsis of my findings. I will also add electronic notes to the medical records system when I return to the facility. Her family asks if I will stay for a family prayer, and I am happy to oblige before departing.
Arriving back at the facility a little later than I had hoped, I proceed to the auditorium where the volunteer celebration is underway. It’s a raucous crowd today – don’t think for a minute that there aren’t happy times in a hospice facility! clients or family are also welcome to attend, and there are a few familiar faces here. A volunteer hearing a few words of thanks from a client is an amazing gift, and those exchanges are often very emotional. I help myself to a cookie, give my personal thanks to the volunteers being honored today, and stop quickly in my office to gather my things before going home for the day.
As I sit down quietly at home to relax and have a meal, I think of the day’s events and recall each client’s struggles, their families, their stories and their amazing Spirit. I take time to visualize each of their faces and imagine them at peace. Every day, when I’m able to reflect on the events and challenges of my intertwined life and career, I give thanks that my life’s path has led me to a place where I can truly fulfill my life’s purpose while providing comfort and care to those in need.
This is a hypothetical day in the life of a hospice social worker. While these family stories are fictional to preserve patient and family privacy, they accurately depict the daily activities that a social worker encounters.