Episode 3: When is the proper time to call Hospice?
In this episode, Mitch explains how to determine when is the proper time to call in Hospice.
"Unfortunately, many families wait to call Hospice until the final days and weeks, not knowing that they could have started receiving additional very special palliative medical care with equipment and supplies related to their loved one's terminal illness, at no cost, much earlier."
welcome to another episode of Living With Hospice. My name's Mitch Ware and I will be your host. I've been involved with hospice for over 13 years, both as a family caregiver and a trained hospice volunteer. I just made a fresh pot of coffee, So come on in. Grab a cup, pull up a chair and let's talk about today's topic. I think one of the biggest questions most commonly asked is, When is it time to bring in hospice? We're gonna take a good look at that today because it's a very common question, and folks often wonder if I bring in hospice in my giving up. And the answer to that is absolutely not. What it does mean is that you're taking control of the process. You're making the decision to have quality of life as opposed to continuous treatments that may make you sick or your loved one sec that may or may not prolong life. Many people would rather have quality of life over an extra few weeks or a month, feeling sick week in bed bound. I'm not saying that hospice care will get you out of the bed and ready to run the next marathon or five K. But I've seen time and time and time and time and time again. People with a terminal illness get off of the treatment merry go round and actually feel so much better physically, emotionally and spiritually. All is a result of their hospice experience. Now, to be clear, hospice care can only start after you have stopped curative care. However, if you or your loved one have been given a terminal diagnosis, now is the time to explore your end of life care options. Believe me, I understand no one wants to think about losing someone they love. For that reason, many families delay discussions about end of life care. If you're asking yourself well, when should we call hospice? There's a good chance your loved 1 may already be eligible to receive this added layer of uniquely specialized care and support. Even if your loved one is not currently eligible for hospice care. Gathering the information about when you should call hospice before the crisis hits will give you time to understand the different options available and term in the best fit for your family. That's really the key when picking out a hospice what is the best fit for your situation in your family? Taking time to do this homework is really going to save you a ton of anxiety later. I wish I had a nickel for every time a family told me that they wish they had called sooner. Oh, my goodness. Unfortunately, many families wait to call Hospice until the final days and weeks, not knowing that they could have started receiving additional very special palliative medical care with equipment and supplies related to their loved ones. Terminal illness at no cost much earlier As a mentioned in previous episodes, hospice care improves the patient's quality of life by managing pain and other symptoms in comfort issues not only for the patient before the caregivers by a having someone there someone that they can lean on, seek guidance from and receive much needed support during this really difficult time. In fact, I've I've had patients that improves so much well in hospice care that they actually graduated out of hospice, not many in all these years, maybe four or five. What that means graduated out of hospice care. That means that their prognosis changed, meaning that they no longer had a prognosis of six months or less. So if I have a loved one and here she is in treatment but not doing well or not getting the desired results, how do I know it's time to at least start thinking about hospice if the doctor and nurse haven't mentioned it yet? How many of these events apply to you In your situation, you're making frequent hospitalizations or trips to the E. R. Your frequent or re occurring infections are popping up o. R. There's a reduced desire to eat, leading to a significant weight loss and in changes in body composition or baby rapid decline in just overall health in the last few months, even with aggressive medical treatments or maybe uncontrolled pain and shortness of breath or nausea or vomiting or maybe decreasing alertness. Ah, withdrawal. Increased sleeping are just overall mental confusion, and some people just a inability to perform tasks. Ah, daily living such as eating or walking or using the bathroom or getting dressed. A change in these cognitive and functional abilities are there's a flag there. This is deteriorating mental capacity, these are The things need to talk over with your doctor and Maybe it's time to make a decision to focus on quality of life instead of aggressive treatments that may or may not work that may mean adding a few extra weeks, or or a month. The patient has been diagnosed with a life limiting condition with a prognosis off six months, eight months, a year or less. It's time to call hospice, and you can do that by Googling Hospice online. Or you can ask Siri for the phone number for your local hospice. But I recommend going to your clinician, your oncologist. They all have literature and phone numbers at the very least, of your local hospice providers. Every family is different, depending on your family dynamics. The decision to work with hospices often made, is a family. Everyone that's willing can participate in the meetings with the hospice staff. You can ask questions. You can get information. I can't tell you how many times I've been told by family members that they had no idea the hospice was so comprehensive when it came to total palliative care. And quite frankly, they were incredibly relieved. They felt incredibly blessed. Nearly every family I've worked with has told me they wish that they had called sooner. Man, I wish I had a nickel. For every time I heard that I'd be a very rich man. So many people just wait. They wait because they aren't sure they wait because they aren't clear a ce toe what hospice really is, or does. But sadly, the common reason many people wait is because, well, they think if I call hospice, I'm throwing in the towel. I'm I'm letting down my loved one. I'm I'm giving up the good fight. I'm failing my family. Nothing could be further from the truth. Nothing transitioning to hospice care is taking charge of your care. You're not giving up just the opposite. It's making the decision for the remaining days that you or your loved one has. It's going to be filled with comfort and the best quality of life possible. How many times do you hear about someone, perhaps a patient with a like a terminal pulmonary or heart condition, and may be dementia? They finally failed to the point that they no longer eater even drink water. Then the family calls in hospice and they're so you get the word that they had passed away what happened here. It is safe to say that this family waited too long before they made that call the hospice. And that's easy to do because, after all, nobody wants to give up. Nobody wants to throw in the towel. Nobody wants toe Say I couldn't fight the fight. Very few want to look death in the face, but if they'd called hospice, there's a good chance that their loved one would have had a much better quality of life in those last few weeks or months. That family would have been supported, would have had a team of professionals partnering with them in a more personal approach to end of life care and who knows with their level and being made more comfortable, they might have even lived longer. They certainly would have lived better. For sure. They would have lived more comfortably, and so would the family and the caregivers. Please understand. I'm not taking any shots that curative care here, not at all. But I'm shining a light on the fact that curative care and palliative care are two entirely different approaches to medicine. Rest assured, we need both. We definitely need both, but at the end of life. The hospice form of palliative care makes a world of difference for patients and their families. Let me wrap up this episode with a short story about how hospice made a huge difference in one of my patients. It will just call him William. That's not his real name, of course, but we'll call him William. I was assigned to go see William. He was an elderly gentleman, late nineties, lived in a very nice assisted living facility. His diagnosis? Well, um, he was just tired. His body was giving out. His heart was weak and he had some breathing issues. He didn't see very well. In fact, he was totally buying 21 eye. He'd been a missionary in the jungles of South Africa and also over in South America for gosh decades and decades. He dug wells. He built hospitals. He preached the good news around campfires and in huts made of grass and banana leaves. He had contracted most every disease known to man while serving in these jungles. Unfortunately, his lovely wife became very ill and had to return to the States Well, The doctors told these missionaries that her immune system was highly compromised in that she just could not travel to those regions of the world anymore and and live in those conditions. So he took a job at a very well known and prestigious seminary out. East eventually took a position as a dean at a local college and seminary here in our community, he continued his education, obtaining a doctorate degree in theology and several other disciplines. He was asked to serve as president of this college. Eventually and well, he served faithfully for over 14 15 years. His wife passed away about a dozen years or so ago. Now he'd lived as a bachelor, although he did have two very strong daughters. Gradually, his health began to fail, and they were quite concerned. He retired from his position at the college and continued to study and speak all over the world. Williams suffered a cardiac event right after Christmas that year and was seen by several specialists. He eventually was given options for treatment, not curative, but maintenance, and in most of which would make him feel either sleepy or loopy or unable to function normally. That just wasn't Williams style. He had heard about hospice typical to William. He got on the phone and called Ah Hospice Organization. As fortune would have it, it was the one that I volunteer for. He met all the qualifications, was put into our service in the case worker and the social worker visits. He'd mentioned that he really enjoyed music and, of course, the daughter's air saying, Oh yes, he loves hymns and he loves to sing. So our admin team put him on the list of patients seeking music visits. And if you've listened to any previous episode, you know that I am a bedside musician and I took him into my charge. I'll never forget my first visit with him. He was very small in stature, but wow, hiss smile lit up the room. He had a big personality. He was very friendly, genuinely glad to to meet new people, including me. And I typically ask my patients on that first visit. What type of music do you like? Before he could answer? I hear two female voices in unison say, without any hesitation hymns. He likes hymns from the Salter him? No, none of that modern stuff. As I wheeled around and came face to face with Williams, two well meaning daughters. We'll just call them Jennifer and Judy. For now, that's not the real names, but we'll use those names for now. I greeted him and introduced myself and took out my guitar. I set up my iPad. That's Ah, where I keep all of my my song notes. And, ah, we had a good time singing many of the old hymns, Of course, out of the Salter him? No, and we ended our time with amazing grace. After a few weeks, William's health began to falter. And, ah, he wasn't sitting up anymore. In this chair, he laid in his bed or on a couch most of the time. On this particular day, both daughters were present. When I was there, we started to sing the old hymns, and one of the daughters asked if I minded if they went downstairs and got some lunch while I was there. Of course, I responded by saying Absolutely no problem. I'll be here for a while longer. William have been laying on the couch with his eyes closed. He must have heard the door close in the opened one eye and and asked me, Hey, have they left yet I chuckled and said, Yes, it's just you and I Well, he opened the other eye and turned over my way and asked if I knew any Western music. Not country, Western, Western. Hey, I replied. You mean like Gene Autry and Sons of the Pioneers and Roy Rogers and such? He goes, Yes, well, I replied that I did. So I started playing and singing, Ah, tumbling tumbleweeds by the sons of the pioneers We hit on for 20 minutes. Williams, singing every word of a lot of these old Western classics, even asked me if I knew any George Strait. I said, Well, not offhand, I'm sure I do know of one of his songs or so, but not by that name. But I'll learn some for next week. I felt like I really needed to open the door at that point. And Just as I did. I saw the elevator doors open and out came two women. So, for fear of blowing William Secret, I began playing and singing the third and final verse of Amazing Grace when we've been there 10,000 years and they walked right in and we're not the wiser as I packed up to leave the girls shook my hand and thanked me for my time. And I walked over to William Lane on the couch there, and I told him I like L. C. M next week and he he shook his head and thanked me and winked. A week later, on my way to visit William, I remembered that I'd forgot toe learn that George Strait's song. Oh, no. So I did what any any person would do. I picked up my phone and said, Hey, Siri, what is George Strait's greatest hit? Syria always comes through for me. Thank goodness. So William's daughters met me at the door of his room that day. Their eyes were red and full of tears. Wow, I've seen that look before I thought to myself. Well, maybe William has has passed on. I walked right over to him, line on the bed. He was resting peacefully. He was in and out of sleep. I asked the ladies if I could play some music and they said Yes, please. I took out my guitar and I began to finger pick some hymns, some that I knew that that he really liked. I suggested that they go maybe get something to eat. I reminded them that, Hey, they had to take care of themselves in order to take good care of their father. To my surprise, they agreed, and they left As soon as they entered the elevator. I leaned over to William and said, You know, I promised you a George Strait's song So here's the biggest greatest hit he ever had and I began to play All my exes live in Texas and his feet started Going back and forth and back and forth to the rhythm of the music is a saying. I just I was just feeling, Ah, blessed. I was blessed it. It's seen him be blessed. A slight smile came to his face and well, I've played a few more of those cowboy songs knowing that, uh, he loved him stuff like, Don't fence me in by, uh, Roy Rogers. And and just about when I was ready to finish, I hear a ding coming down the hallway in the elevator doors opened, and outcome Jenny and Judy. So I immediately went into the third and final verse of Amazing Grace when we've been there, 10,000 years. And when we all finished singing the song together as we sang the first verse again acapello, I packed up my guitar, put away my iPad and told William, See you later, alligator. With his eyes closed, He smiled, and as I held his hand, he squeezed it. I got my truck and I was headed down to my next stop. I just gotten down the belt line a few miles and course. The traffic was always really thick at that time of day and and the phone rings, it was the office telling me that William had passed away just a few moments after I left. Wow, what a huge blessing for me to be able to share in his transition to heaven because of hospice. I was there and because I was there and I was in tuned with what he really wanted, I was able to bless him, and he passed away with a smile on his face and a song in his heart and his toes just to tap in. I am a volunteer for hospice, Hospice says. A lot of volunteers like me serving his musicians, hairstylist, pet therapy owners, cosmetologists, historians, people come in will write your life story for you so that it could be handed on two generations. We have companion visitors, house cleaners, grocery shoppers and much, much, much more. If you have a loved one that is facing an end of life situation, don't wait to call. Contact your local hospice. Begin to get these service is lined up and begin a better quality of life for yourself and your loved one. In our next episode, we're going to look at all of the different service's and resource is the average hospice can offer. In the meantime, if you have any questions about hospice or a particular hospice situation, please drop us a note at firstname.lastname@example.org. And who knows? We may cover your question in a future episode. Thank you for ah, your time today. Thanks for coming over. We appreciate your visits until next time. I'm Mitch Ware for living with hospice. Have a blessed rest of your day