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Navigating End-of-Life Care: Understanding Hospice Services · Talking FACS

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  Welcome to Talking FACS, what you need to know about family,
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  food, finance, and fitness.
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  This nationally recognized, award-winning podcast is hosted by the University
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  of Kentucky Family and Consumer Sciences Extension Program.
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  Our educators share research knowledge with individuals, families,
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  and communities to improve quality of life.
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  Hello, and welcome to Talking FACS. We share the news you need to strengthen
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  your family, your community, and your state.
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  I am your host, Mindy McCulley, Extension Specialist for Instructional Support
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  with Family and Consumer Sciences Extension at the University of Kentucky.
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  We are housed in the Martin-Gatton College of Agriculture, Food, and Environment.
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  FCS spends much of our time talking about quality of life issues.
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  And even as we look towards our end-of-life journey, there are many resources
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  that families and patients can access to ease this transition.
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  Today, my guests, Brittany Thompson, who is the Bluegrass Care Navigator Provider Liaison, and Dr.
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  Amy Kostelic, Associate Extension Professor for Adult Development and Aging,
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  are going to help me understand these end-of-life care issues. Welcome to you both.
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  Thank you so much for having me, Mindy. Yeah, thanks, Mindy, for having me back.
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  What are some of the options that we have when it comes to end-of-life care?
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  Well, I'd love to go ahead and answer this question quickly by throwing out
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  what I call the dirty hospice word.
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  It tends to scare people a little bit. It tends to kind of, I get some steps
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  back every now and then when I say that, you know, we're going to talk about
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  end-of-life, we're going to talk about hospice care, it can feel like a very scary word.
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  And so I'm here to support our community a little bit in thinking how we want to transition.
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  What do we want out of end-of-life care? And what does hospice have to offer?
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  What can we put in place with you to make that journey fulfill the wishes of
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  our families and our communities?
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  Brittany, what are the services that hospice provides? It's a service.
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  We provide a service. It's not a place. We have a few of these little catchphrases in hospice.
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  Like I said, I like to go ahead and throw the word at people,
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  get you used to hearing it for a second before we start kind of discussing what care looks like.
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  And so when we say hospice is a service, not a place, we say that we will provide
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  care wherever a patient or a family resides.
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  So that can be in a traditional home setting. that can be in a non-traditional
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  home setting, such as a senior independent living center or an assisted living
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  center or a nursing home.
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  Anywhere that that person calls home, we even have the ability to start care
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  within the hospitals or to visit our veterans and provide care at veteran facilities.
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  So it's a service, it's not a place, and it's also a team.
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  What makes hospice really special is the team approach that we have to providing
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  expert care for the final months of life.
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  Our goal is to wrap around the patient and the family. And so what we have found
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  is we need more than just medication to do that, right?
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  We need a team of folks to enhance your medical, your emotional,
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  and your spiritual support during this time in life.
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  And so we consider hospice when we are no longer seeking curative treatment,
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  we are seeking comfort care.
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  We are shifting our hope into making the most out of our end-of-life journey.
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  So our goal is to enhance your quality of life and help you treat the bothersome
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  symptoms that might come throughout that time frame.
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  I think that's really beautiful how you stated that. So how do you do that?
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  We might experience pain, anxiety, nausea, some different bothersome symptoms
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  outside of what most people think traditionally for hospice care exists as well. We treat those too.
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  So we have a doctor that's going to oversee your medication management,
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  also going to take you off some medicines if those are no longer needed,
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  because again, comfort's the goal.
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  We want to do what you want to do. It really is a big mindset shift into, what do I want?
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  You know, not what should I, could I, what am I supposed to be doing?
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  But what do I want to be doing? So our doctor helps you from the medication standpoint.
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  Our nurse oversees the entire team and makes sure that you're getting the visit
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  frequency that you need from our staff, that you're getting everything that the patient needs.
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  They're really kind of offering that full wraparound support.
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  We have a social worker on the team that I affectionately say kind of handles the paperwork of life.
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  They're going to help us with if you need an elder care attorney,
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  if you need FMLA paperwork filled out as a family member, if you're looking
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  to funeral arrangements, wills, advanced directives, those types of things.
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  Our social workers are a crucial piece, especially when we've got so much going on.
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  We are so busy emotionally at end of life that we're really helpful to have
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  somebody that can walk you through some of those parts and pieces.
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  Our chaplain is offering spiritual well-being and support, also helping us to
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  identify where you are in your grief journey even before a loved one passes away.
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  So we know what to offer you after the passing of your loved one as well.
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  Our certified nursing assistants are there to really love on the physical body and end-of-life.
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  They're there to help you as you and the family as you're less capable to do
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  things like light housekeeping or bathing is a big part and end-of-life as well.
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  And their work is so beautiful.
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  Our pharmacy is in-house, so we can make medication switches as quickly as we
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  need to. And we also are always supported by our volunteer department.
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  We're special in the sense that we are required to have a certain amount of
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  hours of care provided by volunteer services.
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  So that means that we have handymen that will come and build a ramp if you need it.
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  We have brides that after their wedding, they want to donate their flowers to give back somehow.
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  We have folks that make cookies at our inpatient care centers.
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  So we have volunteers that are available to support you in some of those little
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  nuanced ways that might come up as your family's walking through end-of-life care.
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  We really want to help you live your best life for the rest of your life.
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  Our goal in hospice, or what we call kind of our hospice philosophy.
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  Is our goal is to never hasten death.
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  But we're also not trying to postpone it either. We recognize death as a natural
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  process in life, a natural transition.
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  We recognize the fact that our society does a bit of a bad job talking about this transition.
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  And so we want to, again, fulfill your wishes. But we have some situations where
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  patients do not want to die in their home or families don't feel comfortable providing that care.
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  So we have inpatient centers that people can go into. So, again,
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  I say patient wishes to kind of envelop what differences people walk into end
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  of life looking for, what the goals are.
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  I will say the one thing that we know is that hospice works. We figured it out.
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  We are an evidence-based service, and they have found that we truly can say
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  pain and other bothersome symptoms are better managed with hospice and palliative care.
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  We can say we enhance quality of life. We see improved caregiver well-being.
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  We see medical care that is more consistent with people's wishes.
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  It's also a very underutilized but cost-saving service.
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  And I will end with what I feel like is the biggest benefit of hospice care.
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  It's that we actually find that we get less depressed scores in the bereaved.
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  So when folks come in to receive grief care, they're experiencing less depression
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  after having engaged with our services. I don't know about you all,
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  but that one for me is kind of the proof and the pudding of the goodness of hospice care.
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  You know, in my experience working, especially in long-term care.
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  You know, regardless of how much you plan or for those who choose to keep,
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  you know, death at arm's length, I think hospice and the hospice care teams
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  can really help the individuals and families with all that comes with end of life.
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  And you really highlighted, you know, all the different pieces and people that
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  help. But I do think as much as you think you're planned and ready for this,
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  you're likely going to run into hiccups or that death isn't maybe going to be
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  exactly like you planned it, almost like a birth.
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  You have everything how you think it's going to go, and then sometimes it doesn't go that way.
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  And so I really think it is important to have people with experience and the
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  expertise to hold your hand when you need your hand held or to think about things
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  or talk about things that you've not yet thought about.
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  And again, to really walk you through that end-of-life care and process and
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  ask her, too, and what that entails. Thank you.
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  Absolutely. And I also have a bit of a healthcare background, Amy.
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  So it's like, I think that we're used to like planning to not plan, if that makes sense.
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  I think in my mind, it's like, oh, I have seen the different ways that passing can happen.
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  So what's the point almost of putting a plan together? So for anybody that kind
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  of feels that way, let me reframe and say that 90% of death is natural disease progression.
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  10% is going to be that unexpected. So for anybody that, again,
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  has kind of that mentality of, well, I've kind of seen it all.
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  Why would you plan for that?
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  Or why would you kind of put that in place?
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  Because we could follow your plan potentially, right? Like we could fulfill your wishes.
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  90% of the time that could happen. But unfortunately, our rates of what we call
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  hospice penetration rates in our communities are not where they should be.
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  And about only probably about 50 to 55% of Central Kentucky is getting hospice
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  care with us and getting some of that support to put those plans in place.
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  Of that 50 to 55%, only half of that is getting more than two weeks of care with us at this point.
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  So when we consider that conversation, like you said, Amy, about planning before.
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  Being there with you during the transition, and then also supporting you afterwards,
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  it's just so crucial to start to reach out and to start having these questions
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  and to seek out the services so we can really help you put together the plan that you want in place.
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  Something that you just said, only a small percentage is getting more than two
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  weeks of hospice care. What is a standard or a typical or the most beneficial term of hospice care?
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  Sure. You know, Jimmy Carter's really flips things on its head with his journey
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  in hospice. I'll just go ahead and give a little crow hospice mention there.
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  But our goal of care, Mindy, is to get six months of service with you.
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  Our goal of care is to walk through that last six months of life.
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  Now, we have situations where we will give more than six months. That is our goal.
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  We are, again, we are really unique in healthcare in a sense that we are looking
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  to gain more time with you.
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  We want a longer length of stay, as we say, in our sector of our industry.
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  So we want to get at least six months. We have no crystal balls.
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  I'll go ahead and just bust that myth.
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  But what we do know is decline. And we know how to start to track decline and
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  to think about decline. And we have specialized and local physicians that know
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  different disease progressions. So we know how to walk with you through that.
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  But our goal of care is to get about six months with folks.
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  After death, does hospice continue for those caregivers?
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  Post the passing of your loved one, we are still along for the rod and we will
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  follow families for 13 months.
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  So 13 months post the passing of your loved one, we are checking in on you on that first Christmas.
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  We are checking in on you at that anniversary of that passing.
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  And we are a quick phone call away from you coming in to get whatever that support
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  looks like. We have support groups available to folks, and we have individual
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  counseling that we can do.
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  And then, of course, it's just a community offering. We're available for anybody
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  who has questions about grief and loss and needs support while walking through that journey.
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  That is amazing. And I know, having lived through death of loved ones myself,
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  how important that is. And I applaud you for the work that you do.
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  We're really special to be able to offer that 13 months after a loved one passes.
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  Not every hospice is the same in that regard, but we're also fortunate in Kentucky
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  to be supported by nonprofit hospice agencies.
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  So I never want to be remiss in not mentioning that our bereavement services
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  are actually an offering from your community.
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  It is one way that we've allowed people to use a strength that they might have
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  to give the gift bereavement and grief services.
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  Brittany, how do you all determine who is eligible for hospice care?
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  It's a great question. As mentioned previously, we do not have a crystal ball.
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  I just like to make that big neon letters for folks. We cannot predict.
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  And then the question that I just love to put in front of families,
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  because this question to me, I want you to feel empowered by hospice care.
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  I want you to remember that this was a grassroots healthcare movement that started
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  in the 70s to make sure that no one died alone.
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  And we kind of live and breathe by that. So I want to always encourage people
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  to listen to their gut a little bit.
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  I've heard it in my family. I've heard it in other families.
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  You know, it's really important to be here this Christmas because this will
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  be granddaddy's last Christmas.
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  If you're hearing that, if you feel that, if you feel anywhere,
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  the question is, would I be surprised if this person passed within the year?
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  If the answer to that question is no, if you wouldn't be shocked,
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  if we're making those arrangements to have the family come in for that last
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  Thanksgiving, then let's start the hospice conversation.
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  And anyone can start that conversation. You can call us as a community member,
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  as a doctor, as a social worker, as a therapist, whatever that looks like.
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  We take referrals from anyone in the community, and then we have two physicians
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  determine the eligibility there.
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  So you're not making the decision, right? I just want you to feel empowered
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  that if you feel in your stomach, if you feel in your gut that something's changing
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  with your loved one, or if you're seeing things change with your loved one,
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  or you're hearing the doctor say things like, we're at the end stage,
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  or if you're feeling some of that burnout from all of those doctor's visits
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  and those ER admissions, great time to call us.
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  Let us come in. We will do an assessment in your home.
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  We will talk through services just like we're talking now about hospice care.
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  We'll talk through all of that when we get in front of you. And our hope is
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  to really wrap the families in
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  the comfort of knowing that they're in the right spot at the right time.
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  I love that it doesn't have to come from a doctor or it doesn't have to come
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  from even a medical provider.
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  It can't come from the family or from someone in the community.
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  Thank you both for the time. I think we're going to continue this conversation
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  because there is so much more to talk about.
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  So come back and let's talk some more.
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  If you are just tuning in, you're listening to Talking FACS,
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  Music.