Living with a serious illness can be overwhelming — mentally, physically, emotionally and financially. Without the right support, it can be hard to step back, see clearly, and choose a path forward.
That’s a key benefit of palliative care. These teams include an additional layer of medical support to help you feel better and plan for the future.
In many cases, they also include social workers, who play a special role in patients’ quality of life.
“We’re the guide that takes you up the mountain and helps carry your pack,” says Eileen Pinoos, a social worker on HopeHealth’s palliative care team. “We can really help you process and sort out how you feel, and help you think about the very serious decisions you have to make when you have a serious illness.”
If you’re living with a serious illness, here’s how your palliative social worker can help.
1. How a palliative social worker helps: Understanding your diagnosis
“My biggest role is often to help people make sense of what is happening to them,” says Eileen. “Patients get a lot of medical advice. And they have a lot of facts about their diagnosis. But they often don’t know how to process all of it.”
If this sounds familiar, a social worker can help you connect the dots, along with other members of your palliative team. You’ll spend time considering what your diagnosis will likely mean in concrete terms, like which parts of your life will stay the same and which will change.
“I usually break it down to: What are you not going to be functionally able to do, and how are you going to feel about that? What can you do, and how do you want to live your life given those factors?” says Eileen.
> Related: 7 common myths about palliative care
2. Coping with the mental and emotional strain of your illness
Living with a serious illness can take a heavy toll on mental and emotional well-being. Having a professional to lean on can help you move through some of the toughest moments.
As trained counselors, social workers offer vital support.
“A person with a new cancer diagnosis may be shocked and stunned and still thinking, ‘Is this really my life, or am I going to wake up from this bad dream?’” says Eileen. “If we can bring awareness to what they’re experiencing, we can then slowly walk down the road to acceptance.”
“Once you understand where you are in your life process and what you want for the rest of your life, that leads to much better decision-making,” she adds.
3. Solving practical problems
From community supports like financial assistance to sorting through the tangles of insurance coverage, social workers are masters at connecting patients and families with practical resources.
“Do you need transportation? Do you need a caregiver? Could you benefit from a heating assistance program? We deal with all these practical necessities of life,” says Eileen.
She’s referred patients to trusted legal help for estate planning, and introduced them to experts in social security disability benefits. She’s also there to share resources and reminders that have been pivotal for families in similar situations.
“When you have a serious illness, it’s easy to put things off because you have 3 million other decisions to make,” Eileen says. “Sometimes you need someone to say, ‘You need to get this going in the next few weeks, and here’s a professional to help.’”
4. Thinking through big decisions
Quality of life is a guiding principle of palliative care, and palliative social workers can be crucial to helping patients and families keep it in focus.
For example, your social worker can help you wrap your head around your goals for your treatment, your goals for your happiness and well-being, and how they do — or don’t — overlap. They can help you think through what will and will not be acceptable to you as you continue your health journey.
“For one patient, it might be, ‘Do I want to pursue this aggressive treatment? If it makes me feel this way, I’ll continue with it. But if it makes me feel this way, I’m going to concentrate on family, home, my dog — whatever gives me joy,” says Eileen. “Together, we can integrate those facts into a longer-term plan for what you want for your life.”
5. Navigating family dynamics
Serious health decisions often bring out strong emotions among the people closest to us. Drawing on their training in therapy and counseling, a social worker can support you as you manage those relationships.
One of Eileen’s patients is in his late 80s, and recently decided to forego additional treatment for his illness. He knows his children will have a difficult time with the decision. Eileen is helping him prepare for that conversation, and will be there to support him through it, as well as the transition to hospice care.
For another patient, who has dementia and is no longer able to make her own decisions, Eileen is supporting her son in his role as healthcare proxy. “I’ve been not only helping him decipher his mom’s palliative care decisions, but also deal with family members who don’t always agree with those decisions,” she says.
If you’re living with a serious illness, how can a palliative social worker help?
We all need help sometimes, from emotional support to getting our finances in order. In the context of a serious illness, these challenges can be especially daunting.
“There’s a lot of stress around decision-making that goes into having a serious illness. You’re in a swirl of questions, doubts, insecurities, fear. That really muddies the water to understand: Given the facts, what do you really want?” says Eileen.
Social workers on your palliative team can help with everything from day-to-day stressors to big-picture decisions. They help lighten your load, and have more control over your quality of life.
“If you can alleviate some of that stress and anxiety, you can come to clearer, more focused decisions to improve the quality of your life more quickly,” says Eileen.