Episode 2: So, What is Hospice Anyway?
In this episode, Mitch Ware defines what Hospice is and explains the difference between Hospice, Palliative and Curative care. The episode ends with an amazing short story.
“So what is hospice care again? Simply put, it's a form of palliative care for the patient and for the family that understands that his or her illness is really not responding to the curative care that they have received.
Hello and welcome to living with hospice. I'm your host, Mitch Ware and my sidekicks? Cosmo Kramer, Who is the Alaskan? Husky Irish wolfhound. Sillier than you can imagine. Big Dog is here. And the black and white cat Charlie, also known as Boss Cat or Mr Mayor, if you will, Is here Chloe, the orange cat? The female cat is hiding somewhere as she's fairly shy. But the gang is all here. And so come on in. Have a cup of coffee. Pull up a chair and Ah, yeah, I don't mind, Charlie, if you have to move him, he's okay with that. Although he probably would prefer to sit on your lap. But that's just Charlie. So let's go back to the beginning. What is what is hospice care? Where did it start? What's the philosophy behind it? In a nutshell, hospice care is Ah, it's a philosophy whose origins date way back to the mid 18 hundreds in Europe and the Irish Sisters of Charity, headed up by Mrs Janine Garnier, adopted this philosophy and developed it when they opened up our Ladies Hospice of Dublin, Ireland, and 18 79. It works so well that they uh, they copied that model when they opened up ST Joseph's Hospice in Hackney, London in 1905 Hospice did not become a more widely known form of pound of care until Dame Cicely Saunders founded ST Christopher's House in London in early 1967. The hospice form of care has been a really a center of innovation and inside ever since. Dame Cicely was an interesting person. She had she been a nurse but was at that time working as a medical social worker, and she came upon a patient by the name of David Tasman. Shortly after the war, in 1948 David was suffering from inoperable cancer, and together they discussed her hopes for one day opening up a place that was more of, Ah, home environment, less clinical environment to take care of the terminally ill. And, ah, she hoped that it would do a better job of focusing on pain management and preparing the patient for their journey. Her methods and ideas have been adopted all over the world, and she's known as pretty much the founder of modern Hospice, inspired by name Saunders ideals students at Yale University in New Haven Connecticut invited her toe. Come and speak. They were so absolutely inspired by her that they created in, Launched the United States Hospice Movement in 1974 hospice nurse in Connecticut and an accompanying volunteer made their first hospice home care visit. That's really interesting, inasmuch as most of us that volunteer and visit our hospice patients on a regular basis, we spend a lot of time in people's homes. And up until 1974 that really wasn't a thing. Most hospice care was administered in clinics or institutions or hospitals. In 1981 Nancy Hines in Fresno, California, began caring for um, terminally ill friends. Our acquaintance is in her own home. This in patient hospice home allowed patients a place to come and spend their their final hours their 11th hour with dignity in a home setting where their family or caregivers were not able to care for them in their own homes. But they still had a home non clinical environment. In 1986 Congress made permanent this Ah, this thing called Medicare Hospice benefit, and the various states were allowed to decide whether they wanted to include hospice in their Medicaid programs Hospice Care is really a super duper version of something called palliative care in hospice care, something a patient can receive when facing the end of life. And when curative care well, it's run its course and really can no longer help. Hospice focuses on the quality of life and comfort of the patient. It also focuses on comfort for the caregivers. You know, issues like physical pain, disease symptoms. Hospice offers options for attending to the emotional and spiritual needs of an individual and and as well as their family. This comfort care is also called palliative care. Hospice care is palliative care without a curative intent in hospice care usually comes with more options. By now, you probably have heard the term pound of care too many times on this broadcasting warning. What in the world is that? Well, palliative care is treating symptoms and providing comfort first and foremost, and you'll find it in lots of other areas of medicine. It pops up everywhere. Pout of care might be offered at your clinic or a medical practitioner. It's a part of medicine that focuses on just addressing your quality of life issues like pain or anxiety, all the while. Other parts of your medical team are focusing directly on your illness or injury or whatever, and they're working on the curative solution for it. So palliative care can work in conjunction with curative care and often does. But in hospice care, the curative care element is no longer there. It's just the palette of care, and hospice care usually comes with more options. Okay, let's back up. Take a look at this. For example. You could be in the hospital for a few days or weeks with something and actually receive palliative care, which helps you with a better quality of life on that journey. And you could also receive curative care from your regular medical team, like surgeons and internists and oncologists and other specialists, all the while working in concert to address your overall medical care. Your comfort care, which is palliative care. Your curative care, which is finding a solution to your illness or injury. Many large hospitals and bigger medical organizations are developing a unique palliative care discipline in their education of new medical students and nurses. This is a team that is uniquely trained and tasked with working with you, the patient to recognize and focus on your comfort needs and check this out. Not just your physical, but also your mental and spiritual needs as well. No, they're not. They're not focusing. This part of your team doesn't focus on curative medicine. They're not there to do, um, CT scans and blood work and all of that. Try and find a cure for your ailment. That's the job of the curative. Part of your overall health team really is a wonderful way for modern medicine to evolve. And I think we're going to see more and more of that as medicine evolves and grows. Really, that's Ah, that's really pretty cool. And if you're in a hospital situation or clinic situation or outpatient situation, you may want to talk to your your health care providers in and ask if they do have a unique palliative team of palliative care team that could work with you. Okay, that's the gist of palliative care. So what is hospice care again? Simply put, it's a form of palliative care for the patient and for the family that understands that his or her illness is really not responding to the curative care that they have received. Hospice provides comprehensive comfort care for the patient but different from regular pellet of care. It extends into the support for the family just to be clear. In hospice care, all attempts to cure the person's illness are stopped, and a very comprehensive palette of type care is initiated. Another way to look at this is hospice care is a team of people. It's a team approach that specializes in end of life issues, utilizing this powder of care approach that we've been talking about. All all this is done in one highly dedicated, comprehensive program, finally tuned, well oiled, and the team is experienced, their highly trained, they're vetted, and they really, really care about their patients first and foremost, and carrying about a patient is carrying about a patient's family or caregivers. And as we proceed further into these episodes, you'll hear stories about how the hospice team has impacted not only the patient's journey but also the caregivers in the family's journey in a wonderful, very positive way. In fact, in a future episode, actually not too far down the road from this one, we're going to cover all of the many. Service is the equipment the tools just really awesome things that hospice professionals provide for every patient. But for now, let's let's leave it it. Hospice is just total quality care for end of life patients and their caregivers. Let me share a a brief story with you. When our son Matt entered into hospice care, the first thing that happened was a hospice doctor. Dr. John came to visit with us and he came to Matt's house and sat down in the family room with us. And it was just a wonderful time. He answered all our questions and he made some pretty lofty promises. Oh yeah, we we discussed mats. Medical situation. I recall vividly the doctor looking first at Matt and said, Well, man, here we are. You realize that your condition is not going to improve, right? Hey, Matt, I said Yes, I do Been looking at my wife and I, he said, You know, we can help with making this part of the journey much more comfortable with us. You're not alone. I understand. And let's go forward with this. Matt sort of interrupted and we agreed to tell you I was so relieved to encounter a doctor that really was compassionate and caring not only about Matt, but about my wife and I and Matt siblings. He really seemed genuine, you know. He really listened to us. He read our faces and our body language. They didn't seem to be in a hurry. He wasn't bored with our questions. You could tell he didn't have anything else on his mind, just us. After he'd answered all our questions, he helped us lay out a plan for dealing with Matt's care. He told us that nurses and aides would be paying us a visit the next day, and he brought up our emotional and well being, too. He shared with us that a social worker would be calling honest and she's a therapist. And, um, he also offered up a chaplain for spiritual guidance. And sure enough, the next day, a social worker and a nurse showed up at Matt's house. After they introduced themselves, they started to go through Matt's house like a mom going through her only daughter's empty, stark brand new freshman dorm room, absolutely on a mission. They made a big list of really good recommendations for additional accessories and equipment and even some handy little tools that would help Matt with his ability to get around and improve his overall quality of life. As he filled out this order for equipment, I mean literally were filling out an order form. They said, Don't worry, we'll cover the expense. No charge to you. Wow, We couldn't believe it. And ah, they provided all of this just like they said they would. I mean, I can't tell you what a blessing and relief it was. I remember thinking these people really will help Matt to reach his goal and to be able to stay in his own house. That's really what he wanted. But given his current condition, that probably wasn't gonna happen. But you know what? With the help of these two ladies and the equipment and the accessories that they brought into the house and had installed, well, they don't even know us. They didn't know us from Adam, but they helped us out, and they helped Matt to reach that goal of staying in his own house, Justus, long as he could. Wow, just just Wow, it was terrific. Now, if I haven't mentioned before, my wife and I were mats main caregivers Matt wanted to stay like I said in his own place and that that meant then later on, it meant help with showers. And in all that, and he was wow, 26 or seven years old, the time. So, uh, that was pretty much up to me to help him with that. So I left my job to be there with him. I would take him to his daily doctor visits and treatments, and his mom did, too. We spent time at Henry Ford Hospital in Detroit. She would go down for a few days. Then I would come down for a few days. I remember we found some pretty interesting restaurants while we were gallivanting around in between treatments. One that served, Ah, a special kind of fish that he really liked. Another one served buffalo burgers and he was on steroids. So he was definitely eating most anything that was put in front of him. One particular place was a a little outfit, a little mom and pop shop that made homemade ice cream. And wow, if I ever get back that way, you combat I'm going to pay them a visit. They meant a lot to Matt, and that meant a lot to me. Anyway, Due to all of this treatment and the radiation that he'd endured on his brainy, he had a stroke that November that left him partially blind and with very limited movement on his right side, he could no longer stand up on his own. In fact, a few weeks before he passed away, it was Easter weekend and I had to hold him up as he received communion from the elders in our church. But you know, I'll never forget that smile on his face. He was a piece and really taking it all in that smile touched me in places I've never been touched before. And you know what still does still does. It brought us all a sense of peace and assurance that no matter what, everything would be okay. By the way, did I mention hospice was amazing? And they're amazing people there that are very intuitive, very observant. A week or so after signing on with hospice are her hospice nurse stopped over for her regular visit Made an interesting observation. She said you all look exhausted. Well, we were We were just wiped out. We were tired. We were at war with a horrible terminal cancer and our son, we were emotionally just just done. We were just done, were physically done. But we put on a good face for our son. And ah, you know, he was tired too. Miriam saying he was sick of being sick and looking back on it. He was also putting on a pretty good face for us. I'm sure he was embarrassed that here he was grown man, college educated, and yet his parents had to do all of his caregiving, had to dress him, had to help him use the bathroom. This angel of a nurse suggested that we consider a respite visit to their inpatient facility on the south end of town. She went on to explain that in this respite visit, it would be a like a long weekend where Matt would come to their facility, be pampered by yet another amazing staff, and we, my wife and I and our other sons could be just, well, family. We could be a mom and dad again. They could be brothers again instead of caregivers. We could actually let down our guard and get some much needed quality rest their heads down on her pillow at night knowing he was in great hands. So after a very brief discussion, we all decided, Yep, that was a very good idea. As fate would have it, a bed opened up later that week. So off we went for the weekend, and I mean to tell you that nurse's description of our experience was spot on. We came to discover that this careful attention to details, the compassionate care all of it is typical of this hospice staff. They know their business, they're the best. But their main focus was on his comfort. Physical, mental and spiritual well being. This respite visit was just what we all needed. If she hadn't suggested it, we wouldn't have known about it. We didn't even know it was a thing. So we're forever grateful to her for letting us know that, and in part, that's why we have this podcast to get the word out. The word is that you're not alone. The word is that there's comfort. There's a peace to be had. There's emotional piece. There's financial peace, their spiritual peace. I always tell people that, well, hospice cares for the whole family. If, like most people, your loved one is at home, then we'll come there. No, the nurse, the other staff members. We're only a phone call away. 24 7 Volunteers like me drop by on a regular basis to give caregivers a break. We like to entertain the troops while we're there through, you know, conversation, or perhaps reading the patient's favorite book or passage aloud so they can hear it. Did I mention talking baseball? That's one of my That's one of my favorite things to do. Maybe it's just breaking out the guitar and in singing the patient's favorite songs. I really enjoy doing that. We laugh. We have so much fun And I'll tell you what. It's the fastest 45 minutes to an hour I spend each day. The idea is, well, just forgetting about all the drama of the medical situation and and just having some quality fun. Enriched time friends. Hospice is a blessing, and it's available for everyone who wants it. In our next episode, we're going to discuss issues like How do you know when the correct time is to call in hospice? Er, do they call me? I mean, how does that work and how do you apply for hospice? In the meantime, if you have questions about anything hospice related, please send us an email. You can reach us at email@example.com. We will read each and every question, and we'll answer just a CZ, many as we can right here in upcoming episodes. Thanks again for sharing your time until next time. I'm Mitch Ware for living with hospice. Have a blessed rest of your day.