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A Conversation about End-of-Life Care

December 6, 2018 by Etta Hornsteiner in Care Management, Crisis Intervention, For Individuals, For Professionals, Guardianship, Intellectual Disability, Mental Illness, Power of Attorney, Special Needs Care

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From the lens of a social worker and a professional care manager, Lisa Rogers shares about the difficulties, the tough decisions, the complexities involving end-of-life care for patients and families, and how her presence as a care expert can help guide them through these challenging times.

Etta:  Lisa, describe to us your role at Intervention Associates.

Lisa:  My work with Intervention Associates is a care manager, which I guess I would say is a private duty care manager. I have been working with some of my clients since I started at the organization about three years ago. I have, in some cases, become extremely close with the clients in the way that I almost look to them as family. I work with a variety of different populations. I have a few clients who are special needs, mental health, geriatric, and some working with end-of-life care and navigating the complex medical health care system that we have in place.

The work that I do with them varies. It could be going to doctor’s appointments with them, advocating for them, maybe there’s an emergency that comes up in the hospital. Sometimes it’s simply being there with them to make sure the day-to-day life things are happening – food in the house, things are in order, bills are being paid. Sometimes it’s working with their trust officers to be the eyes and ears on the ground to make sure that the clients are okay.

Same for some of the geriatric or mental health clients. It could be that their family members are local and involved but just aren’t quite sure what else to do with their loved ones or where else to go, and they’re looking for a private person to take on that role of private professional person. Also, sometimes it’s simply that they live out of state and they have some concerns and they want to have a professional involved to make sure that the needs are being met.

Etta:  Your bio mentions hospice care. How much of your work involves that area of care?

Lisa Rogers

Lisa Rogers -Professional Care Manager

Lisa:  It’s not directly or it’s not a huge piece of what I do right now with my clients, but it’s come up in my work, because I do have passion for working with the elderly population. But it could be younger clients who are faced with the same issues or diagnosis, but a majority of my work is with the elderly and working with end-of-life care even if it’s not signing them up for say hospice or comfort-directed care but advocating for them to make sure that their needs are met. That is, they’re kept comfortable, however, they define that to be, and that they’re living the best quality of life that they see fit.

Etta:  How did you get involved in end-of-life care?

Lisa:  It has been an area that I was always interested in when I was in graduate school. I was able to do one of my internships doing hospice care and I think we all have our niches and for some reason that particular population is one that I enjoyed working with. The patients, their family members just being involved in such a delicate, difficult, complex time in everyone’s life. I think the reality is, at some point, hopefully we all are going to grow old and may face some type of diagnosis where we want to make sure we are receiving comfort-directed care if we’ve exhausted all aggressive treatments. And it’s just an area that I always felt needed support—someone who wanted to do it, not as it’s a job but as somebody who really was passionate about learning about these different people and populations and what their history was and what they hoped for and how they saw their end-of-life being.

Etta:  Is it challenging to have an end-of-life conversation with people?

Lisa:  It is a very difficult subject. Personally, I think because it’s not a conversation in that moment that I’m having with say my particular loved one, but I try to put myself in their shoes. If it’s a daughter or son having the conversation about their parents or if it’s the patient themselves or client themselves coming to terms with their own end-of-life and just trying to meet them where they’re at. And I think that even though I’ve had the opportunity to be a part of a lot of those conversations with different families, I don’t think it ever becomes something that is easy or something that I try to put my own stuff into or expectations because it is such a hard conversation and you really never know how it’s going to be and how everyone is going to react but just giving them time to process all the information. I try to explain it to them as best as they can understand.

It used to have a huge stigma associated with it when you were talking about hospice or end-of-life care, and I think my passion is trying to normalize those conversations because it’s not what it used to be and I see how beneficial it is to get those support come up sooner than latereven if it’s not hospice-directed care but palliative care for people who are not quite ready emotionally for hospice. They want to continue with the treatment because they may have some hope that they might have a change in condition and things might improve. But it’s definitely never easy—if I didn’t leave that meeting and take a few minutes for myself to process how that went in my own thoughts and feelings, and again putting myself in their shoes—how it would feel to have the news or have that conversation about myself or about someone else that I care deeply for.

Etta:  You mentioned palliative care. What is the difference between palliative care and hospice care?

Lisa:  That’s a great question. The difference between palliative care and hospice is palliative care is comfort-directed care but also you can still receive aggressive treatment. For example, aggressive treatment may be if you still have radiation or chemotherapy. I would say more radiation than chemotherapy, but radiation for a cancer diagnosis, which can help with your comfort level. You would still receive some care, which part of the hospice definition may seem more aggressive. You may still be going out and seeing your doctors and seeking some treatments.

For hospice, it’s not that you are not receiving care or treatments; it’s that you’re receiving a specialized care and treatment. So if things come up, your symptoms are managed but in the least aggressive way possible. So, where palliative care, if an issue comes up, you may decide you still want to go to the hospital. If you’re in hospice and you’re at home, or if you’re in a facility, your hospice team would try to manage those issues or those symptoms at home. Sometimes managing the symptoms is the least aggressive route which could be with some medications to make people more comfortable, and it could be using alternative therapies such as massage therapy or music therapy—different ways to help try to relax your body and take your mind for a few minutes from what’s happening.

Palliative care you still can get a team of people into your home that will be managing your care and sometimes the hospice and palliative care work hand in hand. And sometimes it’s simply if somebody is just not at that point yet where they’re just not ready for that word “hospice” then there’s another level of comfort that they can receive and support while they’re still coming to terms with their diagnosis.

Etta:  That is tough having a conversation about hospice care for the patient and family.

Lisa:  I try to have when they’re ready as open and honest of conversations that I can with them to break it down to them what would be needed for their loved one at home from the social work perspective. I work with and continue to work with some amazing nurses who can really break down what the disease process may look like. I think just trying to be open and having as many conversations as possible about what the natural progression of this particular illness or disease may look like.

The reality is—caring for loved one at home and making the difficult decision of possibly placing them in a facility because it is so hard as a family member to provide the care that is needed at the end of life since hospice does not pay for 24-hour care at home or in a facility. They only provide for the team that comes out to manage them.

Etta:  Who makes up the hospice team?

Lisa:  The hospice team is overseen by a medical director. And underneath the medical director is your nurse. Underneath the nurse is the social worker, a home health aide, the volunteer coordinator, the alternative therapists—the massage or music therapist, or it’s a chaplain, and it’s a whole team of people that come in. There are also scheduled visits which are kind of overwhelming at first, but they get to know the person and their family and identify if there has been a change in condition.

I think, sometimes family members get so overwhelmed. They might turn down the opportunity to have other people come in to the home besides the nurse and the home health aide because they don’t necessarily want to sit around talking to a social worker about what’s happening. But I say as a trained professional, there have been times where I’ve gone into visit someone and I’ve noticed that there’s a change in condition or concern, and I have had to notify the nurse or the team to make sure that they come out.

You just want to get everyone on the team on the same page and provide as much support to the family and patient. Perhaps it’s having a conversation with them about moving their loved one into a freestanding hospice unit or a nursing facility where they would receive a different level of care that’s not 100 percent on the family itself.

Etta:  What is it that you bring to the table at Intervention Associates?

Lisa:  I think from the perspective of a care manager working for Intervention Associates, it’s a professional who is familiar with working in the medical field and participating in a lot of different challenging conversations with medical professionals and family members—knowing what questions to ask, knowing how to guide the family through any process even if it’s not hospice but just any difficult decision. Is someone safe to leave the hospital? Maybe they’re in the hospital and they’re getting pushed out because they’re “medically stable” for discharge, but there are still some things that are pending and we’re not comfortable with it. So, it is trying to advocate for them to stay until things have resolved and just trying to navigate. What’s the difference between Medicare and Medicaid?  What benefit is it to them having someone under Medicare? What are they entitled to? Or if they’re going home and they need 24-hour care, it’s setting up that 24-hour care and checking in on those caregivers to make sure that they’re doing what needs to be done for that particular client.

Etta:  Do you have a favorite superhero?

Lisa:  I’m not a huge fan of, I guess, fictional superheroes characters, more so would be your real-life superhero. And maybe it might sound a little cliché, but I think my favorite superhero in my life would be my mom. She’s always empowered me and instilled in me that I could do whatever it is I wanted to do in life no matter how crazy it seemed. Maybe it wasn’t decisions or choices that she necessarily would’ve made but having that support. And she raised the family. She went back to school later in life. She graduated; she worked as a teacher. Now that I am a parent and working, I finally recognized what she did in her life to help me and her family succeed and be a good, loving, and caring family.

Etta:  I think she certainly prepared you well for life! I always feel for these complex areas in life, you have to almost be bred for them.

Lisa:  I feel like it takes a different special person to work with different populations, so I definitely feel like this area is definitely my calling. It’s what I’m comfortable with. I’ve been thrown into many different unprepared situations and I’ve been able to navigate them based on my comfort level with the clientele, the conversation and been able to work through it in a way that maybe not in that particular moment we’re successful working together, but we’re able to work on a relationship and become successful in the end. The end goal is work towards that together.

Etta:  What would you like to say to families or someone considering working with a professional care manager?

Lisa:  We say to families that working with the care manager means then you go back to being their loved one, you go back to being their daughter, their son, their sister, their brother, and you’re not the person who is seen as the person running their life and not allowing them to do certain things. You can put that on to a professional who can then, in some ways sometimes, be the “bad guy.” By “bad guy” I mean advocating for them, making sure things are being done that maybe they wouldn’t know otherwise, and making sure that their day-to-day care needs are met. They’re taking their right medications; they’re getting to their doctor’s appointments; they’re getting the medical treatment they need, and then reporting back to the family. So the family can then be a positive support to their loved one instead of perhaps seen as that nagging loved one who keeps making decisions without their loved one’s inputs.

Etta:  Lisa, thank you for sharing about your work. It’s not often we get to have conversations about end-of-life care, so this was quite insightful and extremely informative.

Lisa:  Thank you. I appreciate the time. Hopefully it’s conveyed about how passionate I am about not only what I do at Intervention Associates but also what I do with working with the particular population that I enjoy working with. I could talk about it for hours and just the different situations that come up. At the end of the day, it’s an honor and it’s a privilege each and every client and family that I have come in contact with and continue to come in contact with that I’m trusted to be such an important role in their life. It’s amazing.

 

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