Social workers play a much-appreciated role on every hospice care team. To learn why, we sat down with HopeHealth’s Joni Fortin, a licensed clinical social worker who cares for patients and their families at home.
HopeHealth: How did you come to HopeHealth, Joni?
Joni Fortin: I’ve worked for HopeHealth for 26 years. Right out of graduate school, I was hired to be the full-time social worker at our inpatient hospice unit, the HopeHealth Hulitar Hospice Center. After doing that for nine years, I started caring for hospice patients in their home.
Why do you love your job?
Because I love people, and I love making a difference at this time in somebody’s life.
I took care of my mom a few years back when she had breast cancer. When she said she was done, I said, “Well then, you come here to my house,” and I brought in my team to help me care for her.
Even though I still miss her and I think about her all the time, I have this weird baseline of comfort knowing that I took care of her at home just like I helped so many other people do.
Sometimes people get caught up in all of these worries and distractions. They’ll say, “Oh, I’m doing it all and nobody’s helping me.”
And I’ll say, “You’re choosing to do what you do so that you can live with that, and they have to choose what they can live with. But when you go forward from here, you have to have comfort in what you’ve done. You’re the only one you have control over.”
How do you manage your first visit with a new patient?
An ideal first impression, I would say, is they have to feel your kindness. I can honestly say in the 26 years I’ve been doing this, I still feel that when I walk into somebody’s home, they’re going to get 110% of what I have to offer. Some people are going to be very open to talking about things and some people are not. I’m going to meet them where they’re at because it’s not my agenda, it’s their agenda.
Talk about the counseling component of your job.
We listen to people’s stories. When I meet with a married couple, I ask them how they met. People get to reminisce and share a story of happier times, and it reminds them of that foundation of love. Sometimes we just need to make sure they remember that because this time is very stressful and anxiety-inducing.
It’s our gift to be able to help somebody at this point in their lives because we’re all going to face it. The beauty and the things I see in patients and families and their relationships and their dynamics, even the ones that aren’t great—all I can do is maximize their ability to meet their goals to care.
I love people, and I love making a difference at this time in somebody’s life.
How is hospice social work different than in other settings?
We’re really a different breed in hospice. We look at a lot of different things for people.
Sometimes people hear “social work” and think we’re coming up to judge their situation. That’s not what we’re there to do. We’re there to add to their plan of care so the family has what they need to care for that patient in a home setting.
What are the basic financial needs of this particular family? Do they need help getting Social Security Disability Insurance or Temporary Disability Insurance or Temporary Caregiver Insurance? Most of us can’t afford just to say, “I’m not going to work while caring for my loved one, and hope everything works out okay.”
You work with patients living at home. What if they can’t stay there anymore?
Sometimes the family isn’t able to provide care and they need nursing home placement or help transitioning to the HopeHealth Hulitar Hospice Center.
A lot of people think we’re going to go in and tell them what they have to do, but we don’t. That’s a family decision.
Once a family or patient decides where they want to go, we pursue placement. The first piece is financial: Do they have the resources, or do we need to apply for Medicaid?
Then we do the legwork to find them a facility that they’re in agreement with. We call facilities, we send information, we basically orchestrate the entire transfer to make a smooth transition.
Some people are going to be very open to talking about things and some people are not. I’m going to meet them where they’re at because it’s not my agenda, it’s their agenda.
Can you set up advanced directives for families?
Yes, we help with health care power of attorney forms and living will. We also help people set up the new MOLST form—which is a form people have in their homes that indicates their medical decisions to 911 or rescue personnel.
Do you help with long-term planning?
Yes. Often we’ll have patients that live alone so we talk about the future. We talk about what their expectations are and what would be their wishes in the event they needed to have more help in the home.
I can also help with funeral planning for patients that live alone in particular—but only if they’re open to that discussion because you have to feel out every person as an individual. Some people, I walk through the door and they say, “Yep, I got everything done. I know which funeral home I want and I’ve made my end-of-life decisions.” But not everybody’s like that.
You mention goals. Goal-setting is one of the most important parts of hospice care.
Right, and goals are always patient- and family-driven. It’s not for me to determine what a patient or family’s goals are. It’s for them to decide what they want.
For example, if we’re talking about care setting, I ask, “Do you hope to stay at home? Do you feel like this is going to be doable for you all?”
What kind of support do you offer families with children?
A lot of times people don’t know how to introduce the concepts of what is happening in the home to their children, so we provide guidance and educational support and can meet with the kids.
Whatever those families’ wishes are, we’ll do. Because we all feel, and research supports, that children need to be involved and need to know the truth in age-appropriate terms that they can understand.
Sometimes a parent will say, “They know their Grammy is sick.” But sick is a pretty broad term, and the next time mom or dad gets sick the child will worry. It might be important for them to understand that Grammy has cancer, which is more specific.
Goals are always patient- and family-driven. It’s not for me to determine what a patient or family’s goals are.
Do hospice social workers serve as confidants?
I think the role we play is allowing people just to talk about things they want to get off their chest that maybe they don’t feel comfortable talking to their family about, or feel it will be hurtful to them.
As they get to know us, they may open up about their past and things that were difficult. Maybe they had substance-abuse issues or sexual-abuse issues from the past that they just need to talk about.
I don’t know; they just need to feel forgiven… or to verbalize it to take the sting out of knowing that they’re living with this pain they need to relinquish themselves from.
It’s not like we’re going to fix any of that because we’re not, but people sometimes just need to talk about it.
We have a lot of veterans, and sometimes they never talked about their experiences in wartime, but it tends to rear its ugly head when they’re in these final stages of their disease. We often will get veterans who really want to talk about things that they’ve never talked about. And it’s an honor to facilitate those conversations.
Do you also make referrals to counseling if people need more intensive support?
Yes, we can suggest it or make referrals, and they can follow through if they choose to.
In your 26 years in social work, what have you learned about people or about yourself in this special job you have?
I know that I love this work, that I can’t imagine doing anything else.
I’ve learned that people are generally kindhearted people. There’s good people out there that really want to do the right thing for their family members and sometimes just need help getting there.
People can be in a lot of turmoil, maybe the care or symptoms are getting more difficult. I’ll say, “This is going to work out how we need it to. We aren’t sure how we’re going to get there, but I’m here with you and I’m walking the walk and we’re going to get there.”
“There’s good people out there that really want to do the right thing for their family members and sometimes just need help getting there.”