Joey Wahler (Host): It's sometimes misunderstood. So, we're discussing facts and myths about hospice care. Our guest is Dr. Philip Santa-Emma. He's Medical Director of Mount Carmel Palliative Care. This is Wellness in Reach, Mount Carmel podcast. Thanks for joining us. I'm Joey Wahler. Hi there, Dr. Santa-Emma. Welcome.

Philip Santa-Emma, MD: Thank you. Thank you. Nice to meet you.

Host: Nice to meet you. Great to have you aboard. So first, we alluded to it there, what are some of the basic common myths, if you will, about hospice care that patients and their families often believe and what's the truth behind them?

Philip Santa-Emma, MD: The biggest myth, and unfortunately has been a continuous myth, the biggest myth is that hospice is about dying. Hospice, in fact, is not about dying. Hospice is a program, a large group of medical professionals whose aim is to help people who have terminal illnesses live as best and as well as they can until that terminal illness does take them. But the primary focus on hospice is quality of life, enjoyment of life, being able to do those things you want to do.

Host: Former President Jimmy Carter certainly bucked some of those common beliefs just recently before passing away by staying in hospice quite a bit longer than most do, right?

Philip Santa-Emma, MD: Correct. Hospice is actually two things. It is a philosophy of care. How can we help people who have terminal illnesses live the very best they can? And it is also part of Medicare. It is a defined benefit that Medicare runs and a lot of private insurance companies run. The question that we ask as physicians, that we want to ask ourselves internally to look at patients who might benefit from hospice is: would you as a physician be surprised if your patient declined and died in the next six months? That's the only qualifying measure of whether you are appropriate for hospice care. It is not a limit.

As President Carter showed us, we have many patients who live much longer than we thought they would. And that's a gift. That is a celebration. That is wonderful. But it allows us to continue to care for those patients. And President Carter did us all a favor by showing that it is not about dying. I think he was in hospice too, two and a half years, I believe. So, he was a great demonstration of how hospice can help people live, how they can help people get the quality of life they want. When he entered hospice, he was very clear. "I'm tired of going back and forth to the hospital. I'm tired of being poked and prodded. I want to go home and I want to live with my family." And he went home, and he'd been in and out of the hospital several times. And as soon as we changed our focus to, "What is it you want to do today, President Carter? What is it you want to enjoy about today?" He lived two and a half years, which I think is a lot longer than his physicians thought he would live. But it demonstrates that that support and that attention and that care at home really can help patients live.

Host: Well said. And how about, Doctor, the belief that some have that in hospice all medical treatment is then stopped? What types of treatments are actually continued?

Philip Santa-Emma, MD: The only thing that Medicare says is that there are certain treatments that may not be appropriate, but all treatments need to be focused on helping patients function the best they can for that day. What Medicare says for the most part is that interventions aimed at artificially prolonging somebody's life should be stopped. And our focus is on the day-to-day function of somebody. So, medications that are often stopped, for instance, are chemotherapy. If chemotherapy is not benefiting anybody, it's not helping to slow or cure the cancer, then there's no indication to continue it. However, medications to manage blood pressure and heart failure and diabetes, kidney disease, and emphysema, all of those medications that our bodies need on a day-to-day basis to function well are absolutely continued.

Host: Great for you to point that out. So, how about common misconceptions, if there are any, about the eligibility criteria and the process of enrolling in hospice care?

Philip Santa-Emma, MD: So, the old, old days when hospice first started, it was actually just for cancer patients. It was a great benefit to them. And what we learned is it can be a benefit to anybody. And so, one of the continuing misconceptions is that you have to have cancer to be eligible for hospice, and that's completely wrong.

The other thing is that you have to be dying. And that is even a misconception amongst physicians is I cannot refer my patient to hospice until they're dying, until I'm sure they've got two days left, and then I can refer to hospice. And, you know, absolutely hospice can help at that time, but you miss out on all the support of hospice. You miss out on all the interventions that can come, that that can help, patients, can help families, help caregivers, how it can improve that quality of time, whether it's days, weeks, months, or years.

Host: How about the benefits of home-based hospice care compared to inpatient facilities?

Philip Santa-Emma, MD: I'm going to go back to the last question, one of the other misconceptions that hospice is a place. Hospice is not a place. Hospice is a service. It is a group of physicians, nurses, social workers, chaplains, pharmacists, therapists, volunteers, and a whole lot of other people that come to meet the patients where they're living.

The majority of our patients live at home, so about 80% of our patients that we care for live at home. About another 15% live in facilities, so whether it's an extended care facility or a long-term care facility or an assisted living facility. And then, about 5% of patients that we care for are actually in the hospital. The hospice benefit is a service. We meet patients wherever they're at. At that moment in time, are they able to be at home? Are they in a facility of some kind or are they hospitalized?

One of the benefits of hospice is that if there is a crisis, if there are symptoms out of control, if patients are having pain that's not controllable at home and they need to go in a controlled environment like a hospital, we are able to bring patients into the hospital directly by skipping the emergency department, continuing with their hospice care. But it's provided in a hospital setting and that opens up some other options that we don't have at home. For instance, intravenous medications, having nurses around 24 hours a day, having that intensity of hospital care brought to patients in those moments of crisis.

Now, it's not a place where you go and stay in the hospital for weeks and weeks and weeks. It is usually a very short period of time until we get a handle on the situation and we're able to make transition plans to be able to leave the hospital.

Host: So, that being said, what are some indicators to look for that a patient might in fact be appropriate for hospice care? And how is that decision typically made?

Philip Santa-Emma, MD: The indicators in the big picture is that despite all aggressive medical interventions, you're continuing to get worse. Let's take patients with cancer despite chemotherapy, despite radiation therapy, despite surgical therapy, your cancer unfortunately is continuing to grow, and the interventions that we're giving you are actually creating more of a burden than they are of any sort of benefit.

So at that point in time, there is an option to say, "Listen, what matters to me is the quality of the time I have. How can I best spend that time?" Some patients may say, "Listen, if it's a choice of living without any chemotherapy and its side effects and I may only have three months, I'm fine with that."

Other patients may say, "Listen, what matters to me is the amount of time. I want to continue with chemotherapy. I'll accept all of the bad side effects if it gives me six months." And it's a very personal decision. Nobody can ever tell you that you need hospice. It is a voluntary choice to say, "What matters to me at this time... I know have a disease that's going to take my life. If my choice is six months of feeling bad, but getting six months or three months of being able to be at home with my family, then I want to choose to be able to be at home."

Other indicators outside of the cancer field are people with heart failure, who are having recurrent and repetitive hospitalizations. Despite all of our intervention, you're home for a week or two, and then you're failing again, and you're going back to the hospital. People with emphysema who are having progressive respiratory failure and despite being in and out of the hospital are continuing to get weaker, are having a harder and harder time getting through each day.

Host: How about practical tips, Doctor, for those families preparing to begin hospice care for a loved one? I would imagine it's probably somewhat similar to making that decision about sending someone to a facility for other kinds of care on a residential basis. It's hard to know when the time is right.

Philip Santa-Emma, MD: It is very hard and, you know, number one is the most important thing is to sit down with your family members. Sit down with your family, however you define it. sit down with your physician and talk about what your options and what your choices are. One of the big things about hospice is this is your choice. You are in control. And to sit down and talk about, "If I have a choice of going in and out of the hospital every month, I'm fine with that. That's good for me." But if you say, "Listen, what's an alternative?" Because so many times people don't realize there is an alternative. They don't realize there is another choice out there. And to be able to say, you don't have to go in and out of the hospital, you've got to stay at home. You don't have to worry about being in the hospital on Christmas Eve or on Thanksgiving, you'll be able to be home with your family.

So, the biggest thing is that this is a choice and that you have to get past that myth of, "Now that I've entered in hospice, I'm going to be dying in the next few days." Now that you've been at hospice, you get to live better, as well as you can where you want, and you are in control.

Host: A couple other things before we let you go. It takes really special people to work in hospice care, doesn't it? This is not just a job to these people, it's a passion, right? To make those final chapters of someone's life as long or short as they may be, as we've covered as pleasant as possible under the circumstances, right? So, tell us a bit about that staff for you and yours at Mount Carmel.

Philip Santa-Emma, MD: It is absolutely a calling. It is a passion. It is a mission. You know, at Mount Carmel, we are a mission-driven hospital system. We are there because we believe that we're called to do this kind of work, and it is very hard. It is very difficult at times, but it is so rewarding and so many people at times feel like they go into the medical system and what they're told is, "I'm sorry, there's nothing more we can do for you, you know? Thanks." And that's when hospice can come in and say, "Listen, there's always something more we can do for you. There's always something we can do to help you. We can be present. We can be with you." And it is so incredibly rewarding and it is so incredibly gratifying that everybody in our hospital, in our hospice team is there because they believe they're doing good work. It is incredibly rewarding.

I have been blessed to be doing this for, I think, almost 30 years now. I tell everybody that I talk to, yes, it's a difficult job, but I won't change it for the world. I have had an absolutely wonderful career. I'm blessed and everybody that I work with feels the same way.

Host: That's certainly great to hear. And to follow up on that in summary here, Doctor, what's your message for those joining us about Mount Carmel Hospice Care? Overall, what do you and yours really feel most proud of about what you deliver when someone arrives there?

Philip Santa-Emma, MD: What I feel most proud of is that we're there. We're in the moment with patients. We're in the moment with families. We're at the house when things are falling apart. And they've been told there's "no hope." And we are able to sit there and bring hope that your life can be better, that your care can be continued and that we can be part of your life. And that we can be part of your care and part of your support.

Host: Whether that be at home or elsewhere, right?

Philip Santa-Emma, MD: It doesn't matter where you are, we will come to you.

Host: Absolutely. Well, folks, we trust you are now more familiar with fact versus fiction regarding hospice care. Dr. Santa-Emma, keep up all your great work. A pleasure. Thanks so much again.

Philip Santa-Emma, MD: Thank you very, very much.

Host: Absolutely. And if you want to learn more about compassionate end-of-life care and how hospice can support patients and families, please do visit mountcarmelhealth.com/services/hospicecare to explore Mount Carmel's Hospice Services and find the support that you or a family member may need. If you found this podcast helpful, please share it on your social media. And thanks so much again for being part of Wellness in Reach, a Mount Carmel Podcast.