#7 End of Life Questions. Who Decides?

Aging with Altitude

Talking about death does not make it happen. So what stops us from exploring the options for best living towards the end of life? Kent Mathews with the Family Caregiver program with the Pikes Peak Area Agency on Aging (PPAAA) has supported hundreds of individuals and families over his years as an MSW, Chaplain and staff with the PPAAA. He understands and knows the deep fear and loneliness that can come as people age and bodies change. He shares his insight and professional knowledge in supportive ways that empowers the individual and the family to live the lives they want.

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:

Talking about death does not make it happen.  So, what stops us from exploring the options for best living towards the end of life?  Kent Mathews with the Family Caregiver program with the Pikes Peak Area Agency on Aging (PPAAA) has supported hundreds of individuals and families over his years as an MSW, Chaplain and staff with the PPAAA.  He understands and knows the deep fear and loneliness that can come as people age and bodies change.  He shares his insight and professional knowledge in supportive ways that empowers the individual and the family to live the lives they want.

Michaela Nichols – I am here with Kent Mathews, Care Manager in the Family Caregiver Support Center at Pikes Peak AAA. He has over 27 years of experience as a social worker and has worked in hospice care as well

Michaela - 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 decision near the end of their life, but they lose that ability. So being unprepared can put loved ones in uncomfortable positions.

Q – Kent, can you talk a little bit about what barriers individuals experience when beginning to make end of life plans?

A – The most common barrier I hear coming from caregivers, but also when I was doing hospice work, coming even from hospice patients, when it comes to advance directives (is that) they would say, well I’ll execute them or 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 in a physical state where they were unresponsive and couldn’t speak or they couldn’t even begin to fill out those documents. So, I think that’s one barrier. Another one is we don’t like to talk about or think about our end of life. We don’t like to think about our deaths. We live in a very death averse society. Generations ago, when we were still a very rural society and we weren’t as urbanized as we are now and still a lot of people living on farms and out in nature and what not we were still very in touch with the cycle of creation – birth, life, death, all of that. And now we are really, really, removed from that and 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 if (a doctor is) asked to do a treatment and a doctor knew the treatment wouldn’t do any good, 40 percent of the doctors said they would still recommend the treatment. Which is, in my estimation, just rather appalling that they would even do that. A lot of the time 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 them in a way that is comfortable for them and therefore makes their patients comfortable. So, everyone is kind of walking around in the dark. The medicines that we take, a lot of the medicines for chronic illnesses, cover up the symptoms which then creates the illusion that I am 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 8-15 different medications, but I am not going to die. So why would I want to execute those things? So those are some of the barriers I have been encountering in my career.

Q - In the confusion around what end of life care is, can you talk about the differences between non-medical and medical decisions that they (caregivers and their family members) need to think about?

A – I get phone calls from caregivers 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 someone to come out to the house to help mom or dad or a family member with like maybe bathing or dressing or maybe making sure they are taking their medications you really don’t need a nurse to do that.

In the homecare industry there are different levels of skill that health care worker, a home care worker has. In CO when they require homecare 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 and the Class A license is the medical or what is often called the skilled. The two differences between these two licenses, there are a number of them, but two major differences. The A license, or the skilled license, is that home care agency has what is know in the health care world as skilled positions. So, you have a nurse, an RN or an LPN, maybe an NP. You also have skilled positions like the therapist, the occupational therapist the speech therapist, the speech therapist, the physical therapist, or what’s called the OTSTST’s. Those are all skilled positions. CNA‘s are considered a skilled, semi-skilled positions. And the class A’s have CNA’s.

The class B’s have what are called personal care workers and homemaker companions. So, 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 and dad with maybe some light housekeeping, or some bathing or dressing kind of thing. You don’t need a nurse to do that. You don’t even need a CNA, you can use like maybe a homemaker companion who could do the light housekeeping the light meal preparation. If you wanted them to help with bathing or dressing you would have to have a personal care worker because that person 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 are going to pay for per hour is a homemaker companion. In the Colorado Springs area that is probably running $18, $19 dollars an hour right now. The next higher level would be a personal care worker, that’s going to run in the low $20 dollars per hour. Then you’re going to a CAN, that’s going to run in the mid to upper $20’s. And when you get to a registered nurse you are looking at $30 or more per hour for that kind of thing. So, if you choose between somebody who has the same skills (you are needing) a personal care worker who you could pay like maybe around middle twenties or so, or an RN you are paying thirty or higher you are saving money to go with the personal care worker. That’s some of the difference between medical and non-medical.

Q - What are some of the misconceptions around these different types of decisions that people will have to make?

A – Some misconceptions, I’ll just start and go into it, because I did 15 years of hospice social work. One of the huge misconceptions about hospice care is that you have to be bedbound. Now there is nothing in the rules or regs by Medicare, which licenses and oversees the hospices, there is nothing in the Medicare rules and regs that says you have to be bedbound. But most people have the misconception that ‘if my family member is up and walking around and able to do stuff than they aren’t sick enough to be on hospice care’. And in reality, what qualifies a person for hospice care is not what they are doing or not doing. It is, do they meet the specific medical criteria for specific conditions or disease to qualify. Oftentimes people can meet those conditions and still qualify for hospice care but can still be able to do a lot of being able to take care of themselves. I have had hospice patience in my career that were going on two week cruises and going on vacation to Disney Land or Disney World or Las Vegas or traveling 8 or 9 hours across country to go visit family members for 7-5 days and they were the ones doing the driving. But they were still on hospice care. It’s not qualifying for hospice care, it’s not about what you can or cannot do, it’s do you meet the medical criteria. Another misconception is that people think their doctor has to say they are 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, (that) kind of a thing, oftentimes I will say have you thought about hospice care. They will say “but the doctor hasn’t said dad is 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 us social workers, healthcare professionals, even people on the street, we all have our misconceptions (and) misunderstandings about hospice care. If doctors have those misunderstandings and misconceptions, they may not be willing to recommend someone for hospice care.

I had, years ago when I was in AZ, I was working for a hospice who also had a homecare. The hospice was having difficulty getting people from their home care over to the hospice side. For a lot of difference reasons, some of them the misconceptions we have talked about. I remember this one, the daughter was taking care of mom. The 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 and we talked about everything. Mom said I’m not ready for hospice, I am still doing treatment I said that’s okay. And then maybe 3, 4 months later I was asked to go back out, again as home health, but this time mom had moved into daughters’ house. Daughter greeted me at the door and when we were walking down the hall, we walked by moms’ room. mom was laying in bed. Her bed was elevated at a 45-degree angle, moms 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. 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. Before I could stop her, her daughter picked up the phone and called the oncologist. The oncologist was screaming at the daughter and demanded who told her mom was dying and she said a hospice social worker 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 loudly into the phone. And he was accusing me of practicing medicine. He was saying that how did I know that she was dying only doctors knew that kind of stuff. He said if she stops her treatments now, she will 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. 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 am not going to even speculate what those were. This happened twenty years ago, and I still have a vivid memory of it. So, when it comes to this whole, end of life issues, because we have a lot of barriers, we aren’t talking about it anymore. It’s not an easy conversation when I talk to caregivers sometimes, they you know talk about well, I’m thinking dad is really sicker than what he really is. Then they begin to apologize. Because they think that by talking about death and that’s another misconception that if you talk about death its going to happen. We can talk about death all we want but that doesn’t mean it’s going to happen. That’s how deep our fears go as human being when it comes to death and dying, we believe that when we invite it in its going to kill us.

Michaela – 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 – Right

Q – Along the line of medical care, you were talking about hospice care. Can you talk a little about the difference between palliative care and hospice care?

A – I am going to try to give as good of a verbal picture as possible. The picture is, draw a circle about the size of a quarter and draw another circle that is about the size of a small plastic lid on a container. And that small circle needs to be inside that larger circle. 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, if that’s said, all hospice care is palliative care, but not all palliative care is hospice care. There’s a difference. The biggest difference between palliative care and hospice care (is that) in palliative you can continue treatment for whatever your hospice diagnosis may be. So, let’s say its Chronic Obstructive Pulmonary disease or COPD, which means your lungs aren’t working well and its difficult to breath and its going to lead to your death. If you are on palliative care, any treatment 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 might be like cancer. On palliative care you can continue to get your oncology, your radiation (treatment) for the cancer. 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. Hospice care, 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 every two weeks. Most people while they are 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 its not as well regulated. I have had conversations with professionals in the community who are involved with palliative care programs and the palliative care program is struggling to figure out a way to properly bill Medicare. Under hospice care there are very specific billing codes you use. Under palliative care there is not. 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 patients 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 whatnot. But that’s it, a 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, CNA, maybe pull a social work from the hospice side a chaplain would be from the hospice side. No volunteer, but those 4 people. To be honest, they are really losing money from palliative care because Medicare doesn’t reimburse well for palliative care. I have had conversations with professionals in the community that they have said, and I basically said, until Medicare decides to regulate and oversee palliative care like they do hospice care, palliative care is not ever going to really catch on and take off. Hospice care was suffering from the same thing back in the early 70’s and whatnot. When hospice care came over, all of the organizations that were doing hospice care were nonprofits and the professionals were volunteering their time. Or, if it was a very organized nonprofit, they raised the money so they could pay at least the nurses, 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 thing, the other similarity or the other similarities, between hospice and palliative care is that it's provided wherever you are at. So, if you're at home, if you're a care facility, an assisted or nursing facility, palliative healthcare can go there. Hospice care can go there. When I was doing hospice work in Arizona, I had one patient who, when the Hospice care started, he was living under a bridge. And 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. So, for hospice care, that’s another misconception, people often think their hospice care is a place. It's not, it's a type of care, and hospice care will go wherever you are at.

Q - End of life issues are so hard to talk about. America has a fear of talking about it. How would you recommend someone going about talking about it for themselves, talking to their children, or loved ones or a child talking to their parents, about what they want?

A. So, I'll start with the easier one first. So, it's 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. Okay, 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 “so 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. Because 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 if 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. 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 life insurance, 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. And 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 have the authorities say no he wants to stay here. No, he doesn't want to go to the hospital. No, 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 someplace where you don't want to be. So, 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 'cause I love you. I'm gonna let you continue to make your own decisions, but it means it's in effect already. There's 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 is 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, which then means that 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 the powers of attorney, there are things like advanced directives, those are usually like what are called DNR's, 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 or 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 Orders Scope of Treatment. Other states have similar programs, but there, the acronym is like POLST and I’m not sure what that stands for. But I can only speak about Colorado. So, Colorado with the MOST form (medical order scope of treatment), it is like an advanced directive on steroids. On an advanced directive, it's where you list everything that 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. What your doctors’ signature does, is it makes it a medical order. Why is that important? It's important, and I saw that, I saw this happen in my Hospice career both in Colorado and Arizona. So, a person would sign an advance directive and something would happen at the home, and they would be transported to the hospital, and the paramedics would be doing everything against the advance directive, and ER would be doing everything against the advance directive, because the advanced directive that they were working from, even though it was legally signed and notarized by the patient and by a notary or lawyer, didn't function in the hospital world or the medical world because it wasn't a medical order. The MOST form takes that takes care of that problem, so you have everything that you do or do not want done, you have it on this MOST form signed by doctors, so now if something happens and you find yourself going to hospital for an emergency, to the emergency room or for whatever, you produce that and they have to back off because it's medical order signed by a Doc.

Michaela - 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 719-471-2096