When you think of a hospice care team, your first thoughts probably go to physicians, nurses, and medical specialists. It makes sense as hospice care is about minimizing pain and managing symptoms of terminal illnesses. However, care teams extend far beyond medical care. There are also spiritual coordinators, specialized therapists, bereavement coordinators, and social workers. It is a holistic care specialized for the end of life.
For this blog we want to focus on that last piece: social workers. Social workers are an integral piece of any hospice care team. They collaborate not only with patients, but with their families as well by providing empathy, support, and advocacy for patients.
March is National Social Work Month, so let’s look at what social workers do to help patients, caregivers, and families, and what the role of social workers on a hospice care team looks like. We’ll also hear from some social workers on the Heart to Heart team for first-hand accounts of social workers in hospice care.
Benefits of social workers in hospice
Social workers provide support in a variety of areas for patients, caregivers, and families. They can help patients and families communicate during stressful times, educate patients and their caregivers about hospice, and coordinate important medical, financial, and legal decisions both before and after a patient’s passing.
Communication
One vital component is assisting with communication between the care team and the patient and their team. This can include conflict resolution, which can be extremely important when a patient nears end of life. Social workers bring a calmness and open-mindedness to these demanding situations through empathy, advocacy, and critical thinking skills.
When a patient enters hospice care, it can be a stressful time for everyone involved. Nearly 50% of patients are enrolled in hospice for 18 days or less. This provides little time to discuss what a “good death” looks like. Some families may bring in unresolved issues regarding how they want patient care to progress, and social workers can work with everyone to come to a consensus about treatment. This allows the care team the ability to do the work they need to and allows the family to focus on providing the best environment for the patient’s final days.
While nurses and physicians can discuss medical issues like pain and symptom management, there are many other important pieces of end-of-life care. Patients and their families can talk with social workers about topics such as determining Do Not Resuscitate (DNR) orders and health care proxies. Social workers help guide these difficult conversations so the patient’s wishes are better understood, and, most importantly, documented. This is important when the patient’s time is getting shorter, and fast, definitive decisions need to be made. Social workers are key advocates for a patient’s end-of-life preferences when discussing treatment with the larger hospice care team.
Planning and Coordination
Social workers also help patients and families with coordinating non-medical issues–everything from community resources to financial planning. Often, with the urgency and speed of a terminal diagnosis and move to hospice care, families are unsure where to turn. What is the best way to deal with a loved one’s affairs? How will hospice care be paid for? What to do with a loved one’s finances once they pass? What if the family needs assistance with meals at home?
This is where social workers can be so beneficial. They can assist families by connecting them to resources outside of hospice-covered benefits. This can include support groups, Veterans’ programs, Meals on Wheels, and financial assistance nonprofits. They can also assist with Medicare or insurance paperwork, SNAP benefit applications, and other financial assistance for food and shelter to take the burden off families during an already stressful time.
Social workers can also provide help with planning for after a loved one passes. This includes guidance with funeral planning and bereavement resources. Bereavement support is available to caregivers and families up to 13 months after the death of a loved one.
Emotional Support
Another large piece of a social worker’s contribution to hospice care is emotional support. Processing a terminal diagnosis while dealing with the stress of the planning mentioned above can put a great deal of emotional strain on families, caregivers, and patients. Social workers are trained to listen with sensitivity, empathy, and understanding to unique family dynamics, cultures, conflicts, and more. Also, they can provide coping techniques and grief resources unique to spousal or parental caregivers, and to children.
Social workers can also help caregivers talk through issues and emotions that come up as hospice care progresses. Caregivers must make many difficult decisions as their loved one’s illness progresses, and social workers are there as a sounding board to talk through decisions as needed. They can also provide reassurance and encouragement to caregivers, which can help them find peace and strength to persevere and move forward.
Also, as stated above, bereavement support is provided up to 13 months after the death of a loved one. This means social workers can provide support and resources with caregivers and families coping with death and how to move forward after death. Hospice care is holistic care, and it helps everyone involved process and cope with death. Social workers are key to this core value.
Role of social workers in palliative care
So far, we’ve discussed the broad range of responsibilities social workers have as a part of the hospice care team. However, the day to day of a social worker can differ with each patient and each week. They start their days by discovering what is most important for their patient that day. They ask what is more important and what is more worrisome for their patient, and that dictates how their days will move. It could be that the patient needs more help in their homes or help with advanced planning or accessing resources for counseling. It could be all of the above. Social workers remain flexible each day to provide the necessary care, and to communicate with the rest of the care team to make sure nothing is being missed.
Below are some testimonials from social workers on the Heart to Heart team about why they chose to work with palliative and hospice care, how they view their roles, and what their day-to-day is like.
“One of the special experiences that will stay for me with hospice was when we were gifted with the ability to take care of a woman who was in her 30s. She had been battling a long time with an illness and she had her husband, sister, and other family members that were in the home helping take care of her. She had several young children as well as young nieces and nephews in the home. We were able to provide the foundation Build-A-Bears to them as well as provide ample opportunity for end of life education. The family worked tirelessly around the clock, always making sure the patient had a caregiver with her while working different shifts on different jobs to make ends meet. They were a family that truly worked and stuck together. Both myself and the nurse were able to be present at the death visit and shared many heartwarming moments with the families. Months later the husband called in and expressed his great appreciation for everything hospice [did] and stated that without us being there they could not imagine having to go through her death alone.
I think the greatest thing about hospice is giving patients the right to self-determination and allow[ing] them dignity and independence in the last few months of their lives. I think the support and compassion that we show families is something that sticks with the families no matter how long somebody is [in] service. We have had patients that are on for several hours or several years and have gotten numerous family calls, letters, and other shows of appreciation to express the impact that our care has had on their lives.”
– Raven E., Indiana
“I had been working with juvenile delinquents in a secure treatment facility for several years. During this time my father became ill and was hospitalized. My mother was visiting him daily, spending hours at the hospital. I felt guilty that I couldn’t be there as much as I’d like to see my father and spend time supporting my mother. However, my mother was doing fairly well. Although my father’s health was declining my mother raved about this “young man” who would stop by and spend time checking in on her and simply sitting with her at the hospital. This social worker helped my mom and our family get through my father’s passing a bit easier.
When I felt I needed a professional change I had no idea what I wanted to do. I saw an ad for a hospice social worker and it made me think of the “young man” who helped my mother. I took a chance and applied not even knowing what the job entailed but I was ready for a change. I’ve been a hospice social worker ever since.”
– David W., Michigan
