Cancer Social Worker

Lia Akhilanda

Lia Akhilanda says she loves working as an oncology social worker at the University of California San Francisco because she helps patients with everything from filing for disability to just listening to them when they want to share what they’ve been through.

Below, Lia answers some common questions about oncology social workers and their role in supporting cancer patients through treatment.

---

---

What does an oncology social worker do?

Oncology social workers primarily assist people in two categories – sometimes called psych-social support.  

On one hand, they provide support around logistics and social services for issues such as: 

• How to apply for disability benefits
• How to pay rent
• How to convince a landlord that old carpet needs to be replaced now that your immune system is compromised
• Determining eligibility for a DMV disability placard
• How to get a family member from outside of the US to be a caregiver

These are the tasks that need to be addressed in order to have the resources and energy for ongoing treatment.

What is the typical background of an oncology social worker?

I have been in social work for more than a dozen years and medical social work for more than ten years.

I learn new information everyday so certainly someone who is newly diagnosed with cancer may benefit greatly from talking to someone who may already be familiar with the resources available.

It’s really crucial for patients to first focus on their core needs to be addressed. I suggest making a set of lists. 

• What do you need to take care of today? 
• What do you need to take care of in the next month, the next three months? 
• What are the resources that are going to help you get there? 
• What can be delegated?

It is critical to try to be organized and take it step by step.

What I see often is that someone may be waiting for a really crucial bone marrow biopsy in two weeks. Their feelings about treatment or how soon they’re returning to work is dependent upon how that biopsy goes.

At that point, it’s not possible to effectively plan what is next because it’s not yet clear. A lot of my support falls into the area of asking, “How can you be with yourself, be in your body, continue breathing, and stay connected to the people that are close to you until the biopsy comes?”

Providing emotional support

A large part of what hospital social workers do is provide emotional support which is personal, individualized, and depends on the person, their family, and community support.

Sometimes social workers spend hours at a time with a patient, talking about their feelings and beliefs about their treatment and illness, sometimes throughout the course of years of treatment.

How oncology social workers support caregivers

Often the patient’s caregiver may benefit from emotional support in processing their experience. Sometimes just one conversation with a patient is all they need to feel supported while moving through treatment. Everyone is different.

There’s absolutely no cookie cutter experience so the job is really walking in that door and being open. Being a vessel for what needs to happen, trying to skillfully ask the questions that need to be asked, and inviting people to take a step back and take a deep breath and find out where they’re at so they can maybe ask for what they need. 

I encourage patients to be open and curious about their medical social worker. Ask what social work looks like in their setting and how they may be able to assist.

How is an hospital social worker different from other social workers?

Social work as a profession is one of the most diverse fields of work. I can use my graduate degree to work in prisons, hospitals, schools etc.

Outside of the medical field, I have worked in a psychiatric facility and a community mental health center as a therapist. I am interested in the vastness and rawness of human experience, so social work fits me well. 

How is social work different in rural vs. urban hospitals?

Social work is constructed differently in every context, and hospitals are a unique kind of social space. One hospital can be different from a hospital down the road, which may be due to differences in resources in the hospital, the community, the amount of social work staff and what their specialties are. 

I have a family member that was diagnosed with cancer years ago in a very rural area. When I started working in oncology in an urban academic hospital she told me that my role did not exist in her rural cancer center.

Though in her case her community was tight knit and there were a lot of small local community based forms of support, like assistance with transportation, meals and grants.

In contrast to a rural cancer center and my urban academic hospital, another hospital that has greater financial resources can be really different. I encourage people to become familiar with the institution and to stay grounded in their community.

• Who are the people that live next door that can help?
• What are the services that are directly in town?
• How do these resources compare to support through the hospital system or larger cancer organizations?

What kinds of patients do oncology social workers help?

Social workers see a wide range of people in the hospital. They meet and see patients the day that they’re diagnosed, the day they’re starting treatment, the day they’re getting a bone marrow transplant infusion or the day they find out some tough news.

When I knock on a door for the first time I never know who is on the other side, who is with them, and what matters to them and it becomes a great opportunity to experience the stories and understand the complexities in someone’s life to see where we can help.

Once I open the door I observe so much information based upon the energy in the room, what I’ve read in the medical chart, the feelings on people’s faces, the kind of food on the table and a lot of other cues. The way I connect with a 75-year-old person who has a lot of energy to at 23-year-old, who is completely in shock, will be unique. 

When I first meet with someone, sometimes they have a lot to say and have a lot of questions. Other times, people don’t know what to say at all. If I sense that, I reflect to them that for most people this is incredibly overwhelming and there’s too much going on to really know how they’re feeling and what kind of questions they need to ask.

So I invite people to know me in that way– that this is overwhelming and I’m a person here to be alongside you and your loved ones to be with the questions, and even the space before and after the questions.

How do social workers support patients without caregiver support?

When someone arrives at the hospital and we don’t see too many people around them as a team we are curious about why that is. Sometimes it is because home is hours away and they’re fine with video chatting to stay in touch and enjoying the space and quiet of the hospital. Though this often can indicate some social stressors at home and supporting these patients is a priority.

I’ve spent a lot of time working with patients who, for a variety of reasons, don’t have a lot of people close to them. The ways I support them are really different depending upon the person.

Sometimes it’s logistical and for example includes referring them to resources to manage living alone in a cabin that’s five hours away and getting to appointments. Other times it can involve connecting with someone in a way they’ve never connected with anyone before, and providing a sense of safety to talk about how they’re feeling with someone who is neutral to family or social dynamics. 

Often patients want to feel “normal” and talk about things unrelated to treatment, like learning that I love swimming and wanting to talk about the best swimming holes in their town. It’s so beautiful and human to connect with people in such a simple way. Even people who have a ton of support still may find it so valuable to continue to stay connected to the support based in their medical care, which we all encourage.

What is the typical workday like for an oncology social worker?

I work on an inpatient oncology service in a medical center. My office is directly next to the hospital rooms for admitted oncology patients – their temporary homes as they’re going through treatment.

It’s a place where people never imagined they’d have to be, but it’s also the place where state-of-the-art treatment is being offered with the hopes of managing their disease and transforming their lives.

My day starts with reviewing our medical record systems to see who has arrived and what their needs are, then I spend most of my day meeting with them, sharing resources and providing emotional support. A considerable part of my day involves communicating with other medical providers to see how as a team we’re going to support the patients, their families and loved ones to have the best outcomes for their treatment.

My involvement is totally driven by what the patient wants and what they are able to do.

For example, sometimes I may be very hands on and call a county office in advocating for a patient to be connected to resources because that’s too difficult for the family, or if there are linguistic, cultural, and educational barriers making it difficult.

In other cases, I assess the patient’s needs and provide education about these programs and provide the contact information so the patient can get in touch themselves.

In my job it’s really dynamic to see what my involvement looks like in different cases; my relationship with a 23-year-old is different from someone who is 68, and my assistance may look really different for someone who has struggled to keep a job, compared to someone who happens to be a prolific member of society. Cancer is diagnosed across all levels of society.

Helping cancer patients with insurance questions

Usually the first concern of people is how is this going to work out financially? That opens up a whole universe of questions including:

• Is my health insurance going to cover this? 
• Does my health insurance even cover me being in the hospital?

I educate people about how insurance policies generally work and refer them to help them understand exactly what their plan will cover.

Helping cancer patients with financial questions

There’s also the financial aspect of how their diagnosis affects their whole family:

• How will rent get paid?
• Will I be able to pay my daughter’s tuition in college?

Those concerns are continual and the answers and solutions evolve over time.

I often tell patients I help with non-medical problem-solving in their life. I have a good sense of how hospital systems and healthcare work. If I can’t answer their question, I’ll point them in the right direction. It’s so important to have a person who understands these complex systems.

Often one question leads to many, many other questions. [For example,] at the beginning, the question might be, “What am I going to do now that I can’t work?”

Family Medical Leave is a national act that enables people to have job protection for 12 weeks with most employers in the U.S. Patients have to fill out paperwork as soon as possible so that within 12 weeks they can return to their job. Many patients are going to be out of work for longer than 12 weeks so then the questions become:

• How do I keep my insurance if I can’t go back to my job?
• What kind of insurance is available to me through my employer?
• What’s available for me through the Affordable Care Act, the healthcare exchange?
• What’s available for me that I can purchase with my own money?
• What’s available for me with my family’s insurance?

In my state there’s some state benefits that can provide some income replacement, but that depends upon if you paid into that program and if you meet the disability requirements for the program. Disability benefits open up another door of questions including: 

• Do I think this disability is going to last for a really long time?
• Do I think after this I’m going to want to physically return to work and does my doctor think that’s the case?

Then it becomes a conversation of whether or not they want to apply for federal social security benefits which is a different and sometimes really complex system. Sometimes these questions include how family members may be able to take leave, “My sister or my partner needs to take time off from work. Do they get family leave?” Most of the time they can. In some states they could even get a little bit of wage replacement to provide care, as well.

All of these questions are so specific to where you live, the extent of your disability, whether you have paid into disability programs, and under the umbrella of “What’s coming up next in my life?” “How long is this going to last?” 

It can be valuable to, on a good day when you have some energy, sit down with someone and go through these questions. Ask for printed resources or websites because it can be hard to hold onto this information. I have almost every resource I discuss printed out so patients can remember and refer back to our conversation.

Carry a notebook

Always have a notebook with you. That notebook could be for writing down the names of every doctor and nurse practitioner involved in your care that you meet.

In a large hospital you may meet several providers a week that are involved in your treatment and it can be very helpful to remember these conversations.

Use this notebook to make prioritized to-do lists. And, use this notebook or another notebook to write and reflect about your experience to help you process all of the changes in your life.

There are many people that are struggling and perhaps have never had an experience like this in their lives where they’ve been so deeply challenged and so concerned about their family.

Navigating relationships during cancer

Another large area of support I provide is talking to people about the dynamics in their relationships:

• What is it like to now be so close to so much uncertainty in your life?
• What is it like for your role in your family or relationships to change and shift – at least for a short period of time?

Many people benefit from having someone that they can feel safe with, to feel open with, to have a serious conversation. And sometimes it’s helpful to keep it a little bit light and realize there’s also a lot of humanness and imperfection in this – often some brilliant moments of joy in the process, too. 

Finding those people in your life is so important. I get to, in my job [as a medical social worker], be a bit of that for some people. The relational part of my work is so rewarding and is the fuel for most people to get through something they really couldn’t imagine getting through.

What is the relationship between oncology social workers and cancer patients?

Creating a supportive relationship with someone is just like any relationship. Sometimes it is an instant helpful connection that they were waiting for and sometimes it takes time.

I may notice that a patient is hesitant or resistant to talk to me. “I know what social workers do, that’s not really what I need right now. That’s not my thing, it’s not that bad” may be the impression I receive from their interaction. This is perfectly acceptable as long as they understand exactly what my role is, and often it needs to be explained.

In the hospital setting, social work is quite different from what people think. Often the relationship takes time because the nature of my work is personal. In addition to sometimes learning details about someone’s financial life which is quite private, people sometimes tell me things they never told anyone.

I really appreciate taking time to build a relationship with someone. If a patient is a bit shy or if they seem really overwhelmed it’s easy for me to come back and see what it’s like the next day and be open to how their life, needs and outlook may be changing.

Since I work in the hospital where people are in their beds receiving chemotherapy and getting poked and prodded throughout their day often with few opportunities to rest, I’m not interested in being another person taking their energy.

It’s really a craft in my work to sense that in a person, to be present with them wherever they are and speak to them in a way that’s spacious, that gives them time to answer, and that gives us time to just connect even a little bit.

Giving patients space

I think giving someone space is actually one of the best things that can be done. It’s not right for everyone. With so much going on, especially if they’re new to the process, I’ll often hand them a list of organized resources, “Here’s a list of financial assistance programs, here’s a list of people to go to for more support, here’s state disability benefits explained, and I’m here, here’s my information.”

Then I’ll come back and see if I’m the person that can best support them through what they need.

At the same time that I think it’s essential to offer space throughout this process, I also think it’s really important to empower patients and enable them to take ownership of the resources that they want to engage with.

I certainly might feel that someone would benefit from contacting a telephone peer support program, but for me I want to support them in feeling comfortable making the initial call.

It’s really important for patients, as much as they’re physically and cognitively able, to engage with that support and empower themselves to connect with resources directly and authentically. If there’s some resistance or hesitation but they seem to want to engage, I may explore that with them and see what’s underlying. Is there another way we can support them that would feel comfortable?

Lia’s advice to cancer patients on how to manage their experience

In my experience working with hundreds of people who have been diagnosed with cancer, I’ve learned that it’s one of the most transformative experiences of a person’s life, mind, body, and spirit, in all ways, on all levels.

Therefore it’s one of the most intimate experiences that a person can have with themselves and with their world. So I encourage the people I work with as much as possible to create the space that they need to figure out where they’re at: Who they are that day and how they’re feeling, how they want to engage with their world. After checking in, then take things step by step.

When I meet two people that have a cancer diagnosis, the only thing these people have in common is a cancer diagnosis. A human life is so complex and rich and beautiful that one person’s experience of that diagnosis is completely different from anyone else’s. 

Nowadays we live in a world where we’re getting so much information from everywhere and it’s exacerbated by social media. I encourage people to try to be as still as they can handle, even if it’s for half a second, and ask themselves about who they want to be in this process and what voice is most true for them about how they want to handle their diagnosis and treatment.

They might see on social media that someone wants to create a fundraising page. That might be really wonderful for one patient and their support system, but for another person that might not ever feel right. Stay authentic.

It’s so important to make sure you’re inviting yourself into the experience and that you’re aware that your healthcare is completely driven by you.

You may work with some of the best doctors in the world and you may have the most supportive partner, and you’re still in the driver’s seat of your care and what’s happening in your life.

Sometimes I work with people to help them breathe and have them visualize their breath coming into their body and going out of their body. Sometimes I allow people to sit with me and cry and curse or whatever it is that they need to do because that’s what’s true for them. 

As much as you can, give yourself the gift of being in this body and being in this experience even if it does mean that it’s incredibly uncomfortable or incredibly upsetting.

Surround yourself with people that can give you space and tell you that you are cared for, whether that is a nurse, a doctor, hospital staff or another person you meet along the journey.

---