Nov 1, 2020
Talking about death doesn't make it happen, yet so many of us are afraid that this will be the case. Join MSW, Kent Mathews, as he discusses the differences in palliative care, hospice, what Medicare may pay for and how families can ask for help.
Aging with Altitude is recorded in the Pikes Peak region with a focus on topics of aging interest across the country. We talk about both the everyday and novel needs and approaches to age with altitude whether you’re in Ft. Lauderdale, Florida or Leadville, Colorado. The Pikes Peak Area Agency on Aging is the producer. Learn more at Pikes Peak Area Agency on Aging.
Transcript:
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Michaela Nichols:
Hello and thank you for listening to Aging with Altitude, a podcast series elevating the issues that matter. This series is produced by the Pikes Peak Area Council of Governments Area Agency on Aging. Today’s episode is about end of life issues. My name is Michaels Nichols and I’m here with Kent Mathews. Kent is a care manager in the Family Caregiver Support Center at the Pikes Peak Area Agency on Aging. He has over 27 years of experience as a social worker and has worked in hospice care as well. End of life issues can often be hard to talk about. Many people hope that they will be able to make their own decisions or that a loved one will be able to make their own decisions toward the end of their life, but in many cases they lose that ability so being unprepared can put loved ones in uncomfortable positions. So can you talk a little bit about what barriers individuals experience when beginning to make end of life plans?
Kent Mathews:
The most common barrier I hear coming from caregivers when I was doing hospice work coming from even hospice patients was when it comes to like the advanced directives, they would say well I’ll execute them. I’ll fill them out when I need them not knowing that they probably wouldn’t be able to execute them when they needed them because they would be like in a physical state where they were unresponsive, couldn’t speak or something like that where they wouldn’t be able to even begin to fill out those documents. So I think that’s one barrier. Another one is we don’t like to think about our end of life. We don’t like to think about our deaths, and we live in a very death aversive society. Generations ago when we were still a very rural society and weren’t as urbanized as we are now, and still a lot of people living on the farms or out in nature and what not, we were still very much in touch with the cycle of creation. Earth, life, death. All of that. And now, we’re really, really removed from that. And so that’s a huge barrier as well. I think another barrier that comes to mind is, people don’t have an easy place to go to get good information about what’s really going on with their physical condition. I recently ran across a statistic that said that if asked to do a treatment and a doctor knew that the treatment wouldn’t do any good for you, 40% of doctors still said they would recommend the treatment, which is in my estimation is just rather appalling that they would even do that. So a lot of times people rely on their doctors to give them that information to tell them what’s really going on, but most doctors aren’t equipped to do that. They don’t have the skills to do that. They may have the knowledge, but they don’t know how to communicate that in a way that is comfortable for them and therefore makes their patients comfortable. Everybody’s kind of walking around in the dark. You know, the medicines that we take, a lot of the medicines for chronic illnesses cover up the symptoms which then creates the illusion that I’m not as sick as I really am, which is another barrier. Why would I want to execute that because I feel fine? I may be taking 8 to 15 different medications, but I’m not going to die so why would I want to execute those things. So those are some of the barriers that I’ve been encountering in my career.
Michaela Nichols:
In the confusion around what end of life care is, can you talk about the differences between nonmedical and medical decisions that they need to think about?
Kent Mathews:
So I get phone calls from caregivers and they’re wanting to know where they can go to hire a nurse. And then talking with them on the phone, they’re looking for somebody to come out to the house to help mom or dad or a family member with like maybe bathing or dressing, and maybe making sure that they are taking their medications. You really don’t need a nurse to do that. In the home care industry, there are different levels of skill that a home care worker has. In Colorado when they required home care agencies to be licensed, they established a two-tier system. There is a class A and a class B license. The class B license is the nonmedical. The class A license is the medical or what’s often called the skilled. The two differences between those two licenses, there’s a number of them, but the major difference is the A license, or the skilled license, is that home care agency has what is known in the healthcare world as skilled positions, so you have the nurse. An RN, an LPN, maybe a NP. You also have skilled positions like the therapist, the occupational therapist, the speech therapist, the physical therapist or what’s called the OT/STs. Those are all skilled positions. CNA’s are considered a skilled, semi-skilled position. And the class A’s have CNAs. The class B’s have what are called personal care workers and homemaker companions. When you’re looking at home care agencies, and you’re looking for what kind of care, if you’re needing somebody to come out and help mom or dad with maybe some light housekeeping or some bathing and dressing kind of a thing, you don’t need a nurse to do that. You don’t even need a CNA. You could use like maybe a homemaker companion who could do the light housekeeping, the light meal preparation. If you wanted them to help with bathing and dressing, you’d have to have like a personal care worker because that person then can legally touch your family member and provide that hands on, physical care. And going back through all those levels, the least amount that you’re going to pay per hour is a homemaker companion. In the Colorado Springs area, that’s probably running $18/$19 an hour right now. Then the next higher level would be like a personal care worker. That’s going to run in the low $20 per hour. Then you’re going to CNAs. That’s going to run in the mid to upper 20’s. And then when you get to like a registered nurse, you’re looking at $30 or more per hour kind of a thing. So to pay, you can choose between somebody that has the same skills a personal care worker who you could pay maybe around middle 20’s or so or an RN, you’re paying 30 or higher. You’re saving money to go with a personal care worker. And so that’s some of the difference between medical and nonmedical.
Michaela Nichols:
What are some misconceptions around these different types of decisions that people have to make?
Kent Mathews:
I’ll go into like, because I did 15 years of hospice social work. Some misconceptions, one of the huge misconceptions about hospice care is you have to be bed-bound. Now there is nothing in the rules or regs by Medicare which licenses and oversees the hospices. There’s nothing in the Medicare rules and regs that say you have to be bed-bound. But most people have that misconception that if my family member is up and walking around and able to do stuff, then they’re not sick enough to be on hospice care. And in reality, what qualifies a person for hospice care is not what they’re doing or not doing. It’s do they meet the specific medical criteria for a specific condition or disease to qualify. And oftentimes people can meet those conditions and still qualify for hospice care, but be able to do a lot of taking care of themselves. I had hospice patients in my career that were going on two-week cruises and going on vacations to Disney Land and Disney World or Las Vegas or travelling eight or nine hours across country to go visit family members for 7 or 5-8 days and they were the ones doing the driving, but they were still on hospice care. So it’s not qualifying for hospice care is not about what you can or cannot do. It’s about do you meet the medical criteria. Another misconception is people think that their doctor has to say that they’re ready for hospice care. I teach a concept called hospice 101 and basically after listening to a caregiver tell me what’s going on with their family member physically, what kind of chronic illnesses they have, often times I will say so have you thought about hospice care and they will say my doctor hasn’t said that dad’s ready for it. Most doctors, unless they have done time as a hospice medical director, do not know all of the specific medical criteria that go into qualifying a person for hospice care. And doctors like all of the social workers, healthcare professionals, even people on the street, we all have our misconceptions, misunderstandings about hospice care. So if doctors have those misunderstandings and misconceptions, they may not be willing to recommend somebody for hospice care. Years ago when I was in Arizona, I was working for a hospice who also had a homecare and the hospice was having difficulty getting people from their homecare over to the hospice side for a lot of different reasons. Some of them for the misconceptions we’ve talked about. I remember this one daughter was taking care of mom. First time I went out to visit her as the home care social worker, mom was living in her own apartment and mom had cancer. We talked about everything, and mom said I’m not ready for hospice care. I’m still doing treatment. I said that’s ok. And then, oh I don’t know, maybe three, four months later I was asked to go back out again as home health and this time mom had moved into daughter’s house. Daughter greeted me at the door and when we were walking down the hall we walked by mom’s room and mom was laying in bed. Her bed was elevated at a 45 degree angle and mom’s jaw was relaxed so it was dropped. Her mouth was open, her eyes were rolled back in her head and she was doing what we call chain breathing, so really rapid and in succession. So when I sat down with the daughter I said I think your mom is starting to enter what we call in hospice the active dying process. So before I could stop her, daughter picked up the phone and called the oncologist and the oncologist was screaming at the daughter and demanded who told her that mom was dying and she said well I have a hospice social worker in here and he said put him on the phone. I held the phone about two feet away from my ear and I heard the oncologist perfectly because he was yelling that loud into the phone and he was accusing me of practicing medicine. He was saying how did I know she was dying. Only doctors knew that kind of stuff. And he said if she stops her treatment now she is going to die because she needs to finish her chemo treatments in order to stay alive and all of that kind of stuff. I hung up the phone and had a conversation with the daughter. We figured out a way to go to another doctor to get an order, which then allowed our hospice to send out one of the hospice nurses to do the evaluation. Long story short, mom died the next day. We got her into hospice care that night. She died the next day. Sometimes, all of us have our misconceptions and this oncologist evidently had his own misconceptions about what hospice was. I’m not even going to speculate what those were, but that happened over 20 years ago and I still have a vivid memory of it. So when it comes to this whole end of life issue, because we have a lot of barriers, we also, and because we’re not talking about it anymore. It’s not an easy conversation. When I talk to caregivers, sometimes they talk about well, you know. I’m thinking dad’s really sicker than he really is and then they begin to apologize because they think that by talking about death, and that’s another misconception. If you talk about death, it’s going to happen. We can talk about death all we want, but that doesn’t mean it’s going to happen. But that’s how deep our fears go as human beings when it comes to death and dying is we believe that when we invite it in, it’s going to kill us.
Michaela Nichols:
That’s a really powerful story. And it shows that people rely on their doctors as well and they’re not always the specialist in end of life issues.
Kent Mathews:
Right.
Michaela Nichols:
So I guess, along the line of medical care, and you were talking about hospice care. Can you talk a little bit about the different between palliative care and hospice care?
Kent Mathews:
- So I’m going to try to give as good of a verbal picture about this as possible. The picture is, draw a circle about the size of a quarter and then draw another circle that’s about the size of a small plastic lid on a container. And that small circle, the size of a quarter, needs to be inside that larger circle. And so you’ve got a small circle inside a big circle. So palliative care is the big circle. Hospice care is the small circle. So with that said, all hospice care is palliative care, but not all palliative care is hospice care. And there’s differences. The biggest difference between palliative care and hospice care is on palliative care you can continue treatment for whatever your hospice diagnosis may be. So let’s say it’s chronic obstructive pulmonary disease or COPD which means your lungs aren’t working well and it’s difficult to breath and it’s going to lead to your death. And so, if you’re on palliative care any treatment that you were doing for the COPD you can continue. On hospice care, any treatment that was “to cure the COPD” you can’t do. I think a better example than COPD would be like cancer. So on palliative care you can continue to get your oncology, your radiation for the cancer. When you’re on hospice care you cannot do the oncology. You cannot do the radiation. You have to stop those. So that’s the biggest difference. Another difference between palliative care and hospice care is the support level. When people are in hospice care the support they get is really well defined because Medicare pays for the hospice care and Medicare says that hospice care is provided by a team, and the team consists of a registered nurse, a CNA, a social worker, a chaplain and a volunteer. Medicare says in those policies that the only person that the hospice patient has to see is the nurse and the nurse has to visit them at least once every two weeks. Most people when they’re on hospice care take the full team. The nurse, the CNA, the social worker, the chaplain, and they even ask for a volunteer. On palliative care, it’s not as well regulated because I’ve had conversations with professionals in the community who are involved with the palliative care programs and the palliative care program is struggling to figure out a way to properly bill Medicare. Under hospice care there is very specific billing codes you use. Under palliative care there’s not. So you can get reimbursed by Medicare for palliative care, but it’s not easy to do as a provider. The other is because it’s not regulated by Medicare like hospice care is, you can have a palliative care program where it consists of a registered nurse or a nurse practitioner going out and visiting the patient once every three or four weeks to check on things like their pain level or their medications and maybe make some adjustments in the medications or what not, but that’s it. Nursing visit once every three or four weeks kind of a thing. There are some palliative care programs where they will allow a CNA to go out to help with maybe some of the physical care. I know of maybe one, possibly two palliative care programs in our community where they offer the full team. A nurse, a CNA, they’ll maybe pull the social worker from maybe the hospice side kind of a thing. A chaplain would be from the hospice side kind of a thing. No volunteer, but those four people to go out and support the person while they’re on palliative care. To be really honest, those programs that are doing that are really losing money off of the palliative care because Medicare doesn’t reimburse well for palliative care. I’ve had conversations with professionals in the community that have said, I have said until Medicare decides to license and regulate and oversee palliative care like they do hospice care, palliative care is not ever really going to catch on and take off because hospice care was suffering from the same thing back in the early 70’s and what not when hospice care came over. All of the organizations that were doing hospice care were non-profits and the professionals were volunteering their time or if it was a very organized non-profit they’d raise the money so they could at least pay the nurses and maybe the doctors, but the rest of the team were volunteers. And it wasn’t until Medicare came up with the hospice Medicare benefit which is under Medicare Part A, that hospice really began to take off and flourish. My point is, the same is going to happen with palliative care. It’s going to struggle, but when Medicare decides to regulate it and license it like they have hospice care, it’s going to take off. But those are some of the major differences. You can be on palliative care, but not on hospice care. You can be on hospice care, but that also means you’re getting palliative care and there’s restrictions either way. The other similarities between hospice and palliative care is it’s provided wherever you are at. So if you’re in a home, if you’re in a care facility, assisted living or nursing facility, palliative care can go there. Hospice care can go there. When I was doing hospice work in Arizona, I had one patient who the hospice care started. He was living under a bridge and then the other hospice patient that I remember, he was living in three large cardboard boxes in the middle of the dry riverbed of the Salt River. But hospice care, that’s another misconception. People often think that hospice care is a place. It’s not. It’s a type of care and hospice care will go wherever you are at.
Michaela Nichols:
End of life issues are so hard to talk about and America has a fear of talking about death. How would you recommend someone going about talking about it for themselves, talking to their children or loved ones or for a child talking to their parent about what they want?
Kent Mathews:
So I’ll start with the easy one first. So an adult child talking to their parent about what they want. The adult child needs to be thinking about what they know mom and dad have said to them. So why is the adult child coming over to take care of them? It’s because mom and dad want to stay in their home for as long as possible. OK, What mom and dad don’t understand is that they have to put some certain things into place to absolutely guarantee that. So a good starting point would be to say, dad I know that you really want to stay in the house and I’ve been coming over to help you stay in the house, but to really guarantee that you stay here until you die, which is what you told me, we need to be talking about some things like powers of attorney, like a medical power of attorney, a financial power of attorney. And yes, I know you don’t want me in control of your money because you’ve told me that. But without that power of attorney and something happens to you, I can’t access your money to pay the bills. I can’t tell doctors what to do because I don’t have the authority. And that’s what the purpose for those powers of attorney are. Is when you name me as the agent, then that means that if you can’t tell anybody, I have the authority to step in and tell the bank how to pay a bill or to contact your long-term care insurance company to get your long-term care insurance policy started. Without that power of attorney, you don’t get the care in the home because I can’t talk to the long-term care insurance company. They will not talk to me. You know, if you really don’t want to go to the hospital and the paramedics show up, I’ve got to have a medical power of attorney where you’ve named me as the agent because if you can’t respond and they can’t get anything out of you, then I should then have the authority to say no. He wants to stay here. He doesn’t want to go to the hospital. Now that’s not a guarantee, but I now have the authority to do that. Without that, guess what dad? You’re going to the hospital and you’re going to be some place that you don’t want to be. By the way, when you execute those documents usually there’s a place where you can say when I sign the document it means it takes effect immediately. Now that doesn’t mean I’m going to step in and overrule you because I love you and I’m going to let you continue to make your own decisions, but it means it’s in effect already. Another line that will say it goes into effect when I’m incapacitated, and one or two other doctors say I’m incapacitated and can’t make my own decisions. So that one would be a good one if you’re not comfortable with having that authority take place right away. You can check off on that one. It doesn’t go into effect until you’re incapacitated, but either way those two types of documents help me to help you because we live in a society where we value the rights of the individual so much that without those documents, I can’t do anything. Even if your safety is being jeopardized, without those documents I can’t do anything. So that would be one way to have that conversation. Along with powers of attorney there are things like advance directives. Those are usually like what are called DNRs. Like do not resuscitate and that usually covers the two major areas of breathing and heart function. So like if your heart stops and you’ve signed a do not resuscitate that means you don’t want anybody to do anything to get your heart started again. You don’t want anybody to do anything to get you breathing again. In Colorado, we have what’s called the MOST form which stands for Medical Order Scope of Treatment. Other states have similar programs, but their acronym is like POLST. I’m not sure what that stands for, but I can only speak about Colorado. So in Colorado with the MOST form, medical order scope of treatment, it is like an advanced directive on steroids. Meaning, on an advanced directive it’s where you list everything you do or do not want done to keep you alive or not keep you alive. The MOST form has the same thing, but at the bottom it has a place for your doctor to sign. Once your doctor signs it, it makes it a medical order. Why is that important? It’s important because I saw this happen in my hospice career both in Colorado and in Arizona. So a person would sign an advanced directive, something would happen at the home and they would be transported to the hospital and the paramedics would be doing everything against the advanced directive and ER would be doing everything against the advanced directive because the advanced directive that they were working from, even though it was legally signed and notarized by the patient and by the notary or a lawyer, it didn’t function in the hospital world, or medical world because it wasn’t a medical order. The MOST form takes care of that problem. So you have everything that you do or do not want done. You have it on this MOST form and it’s signed by doctors. So now, if something happens and you find yourself going to the hospital emergency room or for whatever, you produce that, and they have to back off because it’s a medical order signed by a doc.
Michaela Nichols:
Thank you so much, Kent, for joining me on this episode of Aging with Altitude. For those interested in learning more about what the Pikes Peak Area Agency on Aging offers, you can go to ppacg.org or call at 719-471-2096. Thank you.
Kent Mathews:
Thank you.