The importance of end-of-life planning
Death and dying are difficult topics to discuss. It may feel distant and hard to think about, but if you’re diagnosed with a terminal illness or a terrible accident happens, having your wishes already planned out can be one of the greatest gifts for your family. Hospice and palliative care physicians Karin Jenkins, MD, and Joshua Keais Pope, MD, discuss end-of-life care and the decisions we should all be thinking about.
Scott Webb (Host): Though we all sort of know that end of life planning for ourselves and loved ones is important, it’s not easy for most of us to think about or talk about death. My guests today want us to know that the sooner we begin having these conversations, the sooner we can put our focus back on what really matters, which is living our best lives.
And I’m joined today by Dr. Karen Jenkins. She’s the Prisma Health Hospice Midlands Medical Director and Director of Ambulatory and Home-based Palliative Care Midlands. And I’m also joined by Dr. Keais Pope. He’s the Assistant Medical Director for Prisma Health’s Hospice of the Foothills in Greenville.
This is Flourish, the podcast, brought to you by Prisma Health. I’m Scott Webb. So doctors, I want to thank you both for joining me today. We’re going to have an important conversation about the importance of end of life planning. As I mentioned, we want to plan ahead. We want to be prepared, and we’re going to all benefit from your expertise and advice today. So, Dr. Pope, as we get rolling here, why is the topic of dying so difficult for us to talk about with family members? And maybe when is the best time to have that conversation?
Keais Pope, MD: Yeah, no, thank you for asking. It’s a great question. I think the main issue that makes dying so difficult to talk about is really, frankly, it has to do with Americans and American culture. We tend to avoid talking about death. It’s a difficult subject for us to broach with our family members, understandably so, cause dying is a painful and difficult topic to discuss.
Many of us are really uncertain as to how to have these types of conversations, which is very normal. I would say to families that the first and best step is really acknowledgement and accepting that we are all mortal human beings, and that one day we will die. And it’s one of the most difficult parts of being a human being to acknowledge it’s really not easy at all. Of course, none of us want to let go of our loved ones. I, you know, that’s why we love them. We want them in our lives and we want them to be with us all the time. But thinking about, talking about, and planning ahead for our own, as well as our own loved ones’ death and passing can be difficult and painful, but it’s extremely important. And we find those that truthfully and courageously accept their own mortality, plan ahead are much more likely to have a beautiful and wonderful ending chapter of their lives. One thing that’s great about hospice care is that hospice providers really serve as guides to help patients and their families navigate through the physical, the medical, I would say even say the emotional, spiritual, and even the existential aspects of the natural dying process and of being a normal human being. The goal really is compassionate, excellent, dignified and comprehensive medical care end of life. The best times for these conversations are really now, in that we have to let our loved ones know what our wishes are for the end of our life and how aggressive they want their medical care to be.
And this is really in the context of their own unique respective disease prognosis, their age. And really it has to do with quality of life is what is it that makes my life quality and what is it that I want from each and every day. And these are conversations that we can talk a little bit more about, but are a lot of conversations that palliative care help, which is just upstream of hospice care and how they help to guide families and help make sure that their wishes are known to their family members and help guide them as they enter this chapter of their lives.
Host: Yeah. And Dr. Jenkins, when we think about the wishes, so from the perspective of the person who’s maybe closer to the end than the beginning of their lives, what types of things should they be thinking about or looking at in terms of making their wishes known? Are there some legal documents they should complete, and how do they kind of go through this process?
Karen Jenkins, MD: I think the most important thing is doing what Dr. Pope spoke of, and that is really talking with your family members and making sure that they understand your wishes and what you consider a good quality of life. There are multiple different documents that you can fill out to assist with that. But nothing is as important as having those conversations. One such document is the healthcare power of attorney. You can actually Google this, and it will come up. The healthcare power of attorney designates somebody who will make decisions on your behalf if you are unable to. And that’s, that’s the most important thing to remember, that none of this takes place until you are unable to make decisions for yourself.
And so, you know, especially with the healthcare power of attorney, you want to have conversations with that person about what you consider a good quality of life. You know, what is important to you. If you have certain limitations, would you want your life prolonged? Another such document is a living will, and that gives your healthcare power of attorney information about your choices at the end of life. One of my favorite documents is the Five Wishes document. And this actually goes into a lot more detail about what you want at the end of life. It talks about, you know, do you want flowers in the room? Do you want spiritual messages read, and really allows people to make their preferences and make their wishes known.
That’s probably the best document as far as a plan for death. And as Dr. Pope was saying, we Americans tend to avoid the thought of death and plans for death, but we make plans for every other part of our life. We make birth plans, we make, you know, plans for our vacations, but, we don’t make plans for our deaths. And by having these things in place, it can be the difference between a terrible death and a death that is, is peaceful and precious, that we would all want for ourselves and our loved ones. Another important document that I do think people should know about is the South Carolina POST form. P-O-S-T form.
And that is a physician order for scope of treatment, and that is actually a physician’s order that is valid in any hospital in South Carolina. And you can do this POST form with your physician and that order sheet can be filed with the South Carolina POST registry and it is valid in, again, in any of the South Carolina hospitals. And that really is another insurance that your wishes will be honored, because those orders must be honored. Now, the big thing is making sure that your loved ones, your family members, your physicians, know that these documents exist and can easily access them. These are phenomenal things, but you have to know where to find them and how to get to them.
Host: Right. What was dad’s password for his computer, or, uh, what you know? How do we get into the safe or whatever it is. Yeah. This is all really good information and you’re both so, right. We tend to drag our feet about these conversations, whether it’s because we’re Americans or humans or all the above. You know, it’s hard to have these conversations, but we need to, it’s important. And Dr. Pope, I wanted to ask you, is there a difference between a living will and a DNR?
Keais Pope, MD: A living will, or really kind of, as Dr. Jenkins was saying, it’s more of an advanced care plan. And that can designate your healthcare power of attorney. It also describes kind of medical care you want to receive at the end of life, how aggressive you want that care to be. A DNR is a separate document and discussion, which focuses on just the single instance of when your heart stops and when you die, what do you want your medical team to do? And there’s usually two options is would you like to be fully resuscitated? And that means chest compressions, which usually end up breaking ribs. It can be very violent and it can be painful for some people. Can cause significant chest pain. And do you want a breathing tube placed in your lungs? Or, you know, and this is in the context of our own quality of life, what’s going on with our body, what diseases we’re, struggling with. Or do you want the medical team to allow you a dignified and natural passing and focus on making you comfortable. This natural passing is called essentially a do not resuscitate, which can be included in your advanced care plan, included in your living will as well. It’s more of a but a specific document that says what happens when my heart stops?
And I agree with what Dr. Jenkins said earlier, the Five Wishes. You can just Google and is a great place to start. As well as the POST form. That’s something I have a lot of patients do, and it’s essentially a medical legal document that says to paramedics, it says to the doctors, these are the discussions I’ve had with my loved ones and this is the kind of medical treatment I would like when I can’t make decisions for myself. So great, question and important forms and discussions to have with your loved ones.
Host: Yeah, absolutely. And Dr. Jenkins wondering, you know, I, I sort of know what hospice care is in palliative care, but when would someone consider that end of life care? When should they consider it? And so on.
Karen Jenkins, MD: I always say when the benefits of treatment are outweighed by the burdens. And so when your doctors are telling you really that there’s not a whole lot left that they can offer as far as curative treatment, that is when we really come in as hospice and focus on quality of life, and we wrap our arms around people and guide them through the last stages of life. The really, really cool thing about hospice care is that when we focus on treating symptoms, on treating people as whole people, we can actually help them live longer with a better quality of life. A lot of times we get involved way too late and people don’t get to realize the benefits of hospice.
So really it is when people are struggling with the severe burdens of their disease processes, whether that is cancer and whether they don’t tolerate chemotherapy or radiation therapy well, or whether that is dementia and they haven’t tolerated the medications for dementia or really are, progressing despite those medications. And so that’s a lot of times, it’s the families who call us in because they really need the extra love and extra support.
Host: Yeah. And Dr. Pope, when we sort of compare the options here, maybe you can explain the differences between hospice care, home healthcare, palliative care, the sort of different buffet of options, if you will.
Keais Pope, MD: Yeah, it’s a very easily confused question. Palliative care, I would say is much more upstream. The palliative care and hospice are on the same spectrum. They’re just on opposite sides of the spectrum. So palliative care is very upstream. We focus mainly on symptom management. Again, having these kind of difficult conversations just to make family members aware of what their loved one, what the patient is wanting, so helping them plan for the future, for when things eventually do decompensate. But we really help to improve your quality of life as much as possible when suffering from chronic illness.
So you do not have to be actively dying to benefit from palliative care. And same as Dr. Jenkins was saying, the research is very conclusive in that patients that receive palliative care earlier, overall do better. They have better quality of life, they live longer and the same can be said for hospice care is when hospice care is involved earlier in a patient’s clinical pathway, the patients do better.
They actually, there’s some research that suggest that they actually live longer because their symptoms are more controlled, because they’re not going to the hospital constantly, they’re able to stay at home and focus on the things that bring them joy and to live their life as fully as they can. Hospice it’s a similar plan of care to palliative care with the same values, the same tenets.
But now we’re focused more on a comfort focused plan of care as opposed to a life prolonging plan of care, which is, includes curative and aggressive treatments, as Dr. Jenkins was saying. And then home healthcare, is kind of related to, but in a different field, I would say. It’s more in line with palliative care. So a lot of my patients, I’ll put on home palliative with home health and home health is usually visiting nurses, visiting physical therapists, occupational therapists, nursing assistants, et cetera. With palliative care as well to help take care of patients and families in the home.
And then once, as Dr. Jenkins was saying, once the burden of their disease has become too much and the treatments have become too much for the patient to really, field I would say that’s when we make the transition to hospice care, which involves a lot more intensive nursing, social work assessments, chaplain care and spiritual counselors for spiritual assessments. And so again, it’s a very gray area in the spectrum.
Host: Gray for sure. Yeah.
Keais Pope, MD: Um, but, and then that’s why we’re here is to help patients and families figure out where they are in that gray spectrum.
Host: Yeah, absolutely. And just wondering, I don’t know if it’s just wishful thinking, of course cause want to always, you know, think on the bright side. How long does hospice care usually last, you know, how long are people usually in hospice care and is there ever scenarios in which people actually get better even though they’re not being provided the sort of curative treatments that they were before they got there? Are there ever scenarios where someone just sort of, I don’t know, mysteriously or magically or wonderfully gets better.
Keais Pope, MD: The answer is yes. Uh, I have patients that what we call graduate from hospice all the time. I graduated a patient last month. And we find that because the care in hospice is so human focused and so human-centered, we find that a lot of patients will actually improve, um, because they’re not going in and out of the hospital. In fact, we see it pretty commonly. It’s just because they’re getting the kind of human-focused care that really all of healthcare needs to start moving towards. And I have it very commonly is that patients will sometimes graduate and do really well. I, Dr. Jenkins, do you have anything to say to that?
Karen Jenkins, MD: Absolutely. I always tell my patients, we celebrate that when patients get better and graduate, I mean, if we are providing really good patient-centered care, they do get better. And so, we celebrate with them and while they don’t necessarily officially qualify for hospice under the Medicare guidelines, we will, a lot of times then follow them on palliative care after that to make sure that we are continuing the patient-centered, patient goal focused care.
Keais Pope, MD: I completely agree. I’ll usually, once patients graduate, I’ll refer them back to home health and home palliative, to make sure they’re maintaining that quality of life and that they’re actively being followed and their symptoms are being managed. And then once eventually patients do decompensate again, they hand that baton of care right back to us. So it’s a very fluid process and we work very closely with our palliative colleagues.
Host: Yeah. That’s so cool. I, was hoping you were going to say yes. I was hoping you weren’t going to, you know, bring us all down and be like, nope, nobody ever gets better. Sorry. So, no, uh, it’s really amazing. I hate to talk about money in these situations, but we have to, Dr. Jenkins is hospice expensive?
Karen Jenkins, MD: You know, hospice is generally covered by insurance and for patients who have Medicare, it’s generally covered by Medicare Part A. So what we find is that this is a huge benefit to families because it is covered a hundred percent. And so, oftentimes this can be a very, very stressful time of life for many families because of the medical expenses that have accrued.
But it is truly a blessing to a lot of families because so much of hospice, is covered, you know, we cover nursing visits, social work visits, chaplain visits, medications related to their symptom management. We cover supplies, so things such as diapers and chucks and, and hospital beds, those sort of things that can really add up; we provide them free of charge to families. So, um, it’s really another way that we can be a blessing to families.
Host: Yeah, a blessing for sure. And Dr. Pope, what are some services that are available to the caregivers? I think sometimes lost in all of this, you know, when we’re thinking about the family member or loved one who is ill or perhaps dying, you know, we forget about the people, ourselves perhaps, and other professional caregivers. Are there some services available for them?
Keais Pope, MD: Absolutely in fact, I think that’s one of the strengths of hospice care. The first is that hospice is a very diverse and multidisciplinary team. So it really consists of doctors and medical providers like nurse practitioners who, we come into the home, I do home visits very regularly.
We come into the home. I mean, the only doctor I, I know other than you know, my other hospice colleagues that does home visits, and we will prescribe medications and talk with patients and families in the home. We actually will cover and pay for any medications that are geared towards comfort and symptom management just to help provide the best quality of life possible. Our nurses are really the main drivers, I call them, kind of the quarterbacks of hospice care. They’re compassionate, they’re kind, they’re caring human beings who really care for patients in the home and help manage and coordinate the day-to-day care. I’d say the doctors kind of act more like the head coach, but the nurses are the ones who are the quarterbacks in running the play to play.
And I, we have such a wonderful team of nurses who I’m in constant contact with if my patients need anything. I would say we also work very closely with social workers or chain professionals, help patients and families navigate through the really difficult mental and emotional aspects of the dying process, while also providing a lot of resources and guidance that can be for, you know, private caregivers and helping them, you know, navigate through the post-mortem process and things like that. The thing that I really love about hospice care is also our spiritual counselors. We have our own, you know, specialists who are trained in providing end of life spiritual care and guidance to families, which is just such an important part of the existential part of being a dying human being. We also have nursing assistants who are very fun, very well trained, who are very compassionate. They help with bed baths, some general cleaning, supportive care of the patient. Some of the really great ones, you know, get some of my patients dolled up and make up and do their hair and things like that. Make them feel human again which is great.
Host: That’s great. Yeah.
Keais Pope, MD: Then, um, finally we have a big volunteer core. So we have fully devoted volunteer coordinators who help to recruit, train, and then implement our volunteer coordinator, our volunteer core to really help you know, patients care. We understand that hospice is a full-time job for a lot of caregivers, and so volunteers are able to come in and help give a little bit of respite to patients and their families. So it’s a very diverse, multidisciplinary team, and we all come together to focus on what can we do to help this human being have the best quality of life possible in the time they have left. It’s a great, great program and great team.
Host: Yeah, team. I think that, that, that’s the important takeaway. It’s a real team effort. And Dr. Jenkins, I think I know the answer to this, but does hospice care end when the patient dies or is there additional support and services available to family members?
Karen Jenkins, MD: You know, this is one of my favorite things about hospice. When a patient dies, the love and care transitions to their family members. And you know, we are constantly evaluating, you know, how are the family members doing throughout this process while their loved one is, is declining. And afterwards we reassess and say, you know, how are they doing now?
And then our bereavement team continually assesses this. Some patient’s families, they might not need much extra love and support, but some families don’t have a whole lot of outside resources or they don’t have extra support. And that’s where we continue to care for them in different ways. You know, we send cards, we make phone calls, we have support groups. And this lasts officially for up to 13 months after a loved one dies. If we feel like there are significant issues that we can’t handle, we will make referrals to professionals. But it, it really is about continuing to love and support the family through their grieving process.
Host: Yeah. Well, listen, I want to give you both an opportunity to answer this final question, and this has been really educational and compassionate and a little bit fun. You know, it doesn’t have to be so, uh, serious. You know, we all want the best for ourselves, for our family members, and certainly that team effort, that team approach really seems to be working. Dr. Pope, what do you wish people knew about end of life care that they don’t already, you know, they probably, it comes up often and you’re like, oh, I just wish everybody knew this. What is it?
Keais Pope, MD: I feel like we could have an hour long podcast for this question alone.
Host: Yeah, we could, yeah.
Keais Pope, MD: Um, cause there’s a lot that people don’t know and that’s okay. That’s why we’re having conversations like these. I would say a couple of things. I would say the first is kind of we talked about earlier is that hospice care is usually started much too late in a patient’s course. And we talked about how, you know, when it’s brought into to a patient’s clinical pathway earlier, they have not only better quality life for longer, but they actually live longer. The human body is amazingly resilient and we can sometimes see that improvement while they’re on hospice services. The other thing I would say is that a lot of Americans have unfortunately had negative experiences with prior hospice agencies and their loved ones, which really saddens me.
Not all hospice agencies are created or operate the same, so if you’re ever not pleased with the hospice care your loved one is receiving, you have plenty of options available to you. There are some hospice agencies, they just show up and they do the bare minimum that’s required by the government. But there are other agencies like Hospice of the Foothills, our agency. We strive to provide excellent, comprehensive, human focused care. We understand how difficult this is to walk. We do everything in our power to help make this difficult time as peaceful, comfortable, and beautiful as possible.
Unfortunately, there’s, they’re not great agencies out there, and there’s some really wonderful agencies out there, and that’s what we strive to provide. I would say finally, kind of the last misconception I hear about hospice is that a lot of people think that hospice care will over sedate or will hasten the passing of their loved one, which is not what we do at all.
We instead focus on prescribing and administering medications only when the patient is truly needing them and helps provide that most optimal comfort, support, and quality of life. But we really allow the patient’s body to take a natural path and provide as much medical, emotional, and spiritual support as possible to really help patients and families just squeeze the juice out of every moment. Cause life still has so many, even when we’re dying, life still has so many wonderful moments to offer us. And I would say that some of the best, most beautiful golden moments in life can happen while in hospice care. And that kind of gets back to where we started, is just, it’s really about acknowledging and accepting our own mortality and learning to live not in spite of death, but because of it.
I always loved Forest Gump’s mama, who always said dying’s just part of living. And that’s something that really resonated with me, kind of like how obstetrics specializes in bringing lives into the world. Hospice specializes in helping humans transition to the next plane of existence, whatever it is for them, and that’s doing it in the most dignified, peaceful, and beautiful way possible. So it’s a great question that we could talk about forever and something I’m very passionate about.
Host: And if this were a different podcast, doctor, I would do my Forest Gump impersonation right now. This is not the, not the appropriate time. Dr. Jenkins last word to you. Same question. What do you wish people knew?
Karen Jenkins, MD: As Dr. Pope was saying, there are many ways to die. And, what I wish people knew was that, hospice is not all doom and gloom. I have people say, well, you know, what you do is so sad. How can you do that? And you know what I tell them is, on hospice, we deal with the dying and then get on with the living.
And so, yes, you know, the very first visit we talk about, you know, what their goals are, what their wishes are, you know, do they want to be a DNR, that sort of thing. But then once we get all that business out of the way, we celebrate life and we help them enjoy doing what they love to do for as long as possible.
And so we can make this time really, really precious and really, really joyful. And I think that is why I went into this field because, we can make lives better. And that is such a rewarding thing. And I do, I love working with a whole team of people who love what they do and who are doing it because they want to support families through this difficult process.
Keais Pope, MD: I would, I would add to that, Dr. Jenkins, I, completely agree and I think that hospice care isn’t just about making dying less horrible, it’s about making life more beautiful. And I think one of the things that we’re trying to do with Hospice of the Foothills, we’re launching our new virtual reality program right now, which is to try and use virtual reality technology to help bring joy and life back to patients lives who are bedridden and helping them achieve their goals and achieve their bucket list items and, you know, going to Paris or even if it’s virtually. And so I completely agree that trying to help people live more fully. And again, there’s a lot of beautiful moments that happen at hospice care. I completely agree. Dr. Jenkins.
Host: I keep hearing, you know, we made the movie reference to Forrest Gump. I keep thinking about Shawshank Redemption and the line get busy living, or get busy dying. You know, and I, it just, it keeps playing in my head since we’ve been having this conversation. And I just love the approach of, yes, dying is a part of this of course, and we’re addressing that part of it, but it’s really about the living part and making the most of those precious minutes, hours, days, years, whatever it is. So, really beautiful today. I’ve enjoyed this so much. You know, sometimes you do these things and you think, oh, well this one’s about death. This isn’t going to be a real hoot, you know, we’re not going to, you know, but your approach, you know, the compassion, the thoughtfulness, the love, all of it has just put a big smile on my face. So just want to say thanks and you both stay well.
Keais Pope, MD: Thanks Scott.
Karen Jenkins, MD: Thank you. You too.
Host: For more information and other podcasts just like this one, head on over to PrismaHealth.org/Flourish. This has been Flourish, a podcast brought to you by Prisma Health. I’m Scott Webb. Stay well.
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