URBANA – According to the KFF Health news, more than 16 million Americans are living alone while growing older… a historic number. And more Americans of all ages report living on their own. But Carle Health says you don’t have to leave this world by yourself. The system is looking for volunteers for their ‘No One Dies Alone’ program.
IPM News and Public Affairs Director Reginald Hardwick spoke with Dr. Mike Aref, Assistant Director for Palliative Medicine and Eric Toliver, Director of Auxiliary and Volunteer Services for Carle Health about the NODA program. Training sessions are scheduled for May 14. Email volunteer.services@carle.com for more information.
REGINALD HARDWICK: What is the ‘No One Dies Alone’ program at Carle?
DR. MIKE AREF: So the No One Dies Alone program is a national movement in hospitals to have people that provide vigils for folks that are nearing the end of life. Now, ideally, many people would like to die at home when that time comes, but some patients, because of their care needs, their symptom burden, are in the hospital. And oftentimes, as you mentioned, there are more and more people that are lonely. They do not have that amount of family, or family can’t be there the whole time, and that’s where having volunteers to sit with people and be that caring presence that people have at the end of life to give them the best experience in the dying experience.
HARDWICK: For a lay person, what is the difference between like hospice and palliative care? And how does this program fit into that?
AREF: Okay, so palliative care is the type of medicine that we provide for people that have serious, chronic, progressive illness, I usually use the failure criteria. So, if you have heart failure or kidney failure, liver failure, neurological failure be things like dementia, stroke or disease like ALS, cellular failure would be cancer. Then if you have symptom burden from that, palliative care is very, very appropriate. Now when disease gets worse and either your physician has no more good treatment options for you, or if you decide that the medical care you’re getting to try to fix your disease is too burdensome, then something like hospice becomes very appropriate. So, all hospice is palliative care, not all palliative care is hospice, and it’s a continuum. You start usually with palliative care, when your disease is at an earlier state and then later on, as your disease progresses and medical treatments don’t work as well, that’s when you do hospice. Now, many times people on hospice or at home or in nursing homes where their care is done there, sometimes, like I said, patients need extra symptom extra relief from their symptom burden, and that is done in a hospital. And loneliness. Being alone is something that we intrinsically as humans, don’t think is a right thing for people to have what they’re passing. And from my experience seeing patients that do have family around, they seem to be more at peace. Seem to be more have less symptom burden, seem to be more content. And again, because most people, some people don’t have that kind of family, or don’t have that density of family. Don’t have enough people, these people have to rest too. Having volunteers, having people that have good hearts, good souls, coming to sit with people becomes very important.
HARDWICK: Eric, I’ll bring you into this. What is required of a volunteer, and how do they help in this process?
ERIC TOLIVER: To become a volunteer, an individual would need to complete a volunteer application. We do have some requirements, such as a background check for volunteers, and then they also have to present some immunization requirements. And then we also do a training, an orientation, type of training, on different aspects of corporate compliance. Then the volunteers also go through a specific training for no one dies alone, so they learn about the types of things to expect during a no one dies alone vigil experience, also things that they can do to help the patient during that time. Really, the main requirement for volunteering is just to be that caring presence for an individual whenever they are in their last hours. So whenever a vigil is called, just being willing and ready to come, to be there, to be with the patient at the bedside, and just spend that that needed time with them being a caring presence. What is the experience like? It’s really tailored to the patient and what they would like to have as an experience, or what? Sometimes there are family members that we can reach out to, even though they may be at a distance and unable to be there, but we try to find out as much information as we can about the patient. Sometimes they’re able to speak at certain stages of the dying process, so we learn more about them then and the types of things that they may like to talk about and experience, but we really try to tailor that experience to the patient and what their expectation would be at the end of their life.
HARDWICK: I remember when my adopted father transitioned to hospice nurse telling me that she had other families that said, you know, just tell me when you know if they passed. And she was impressed that six out of seven of my father’s kids came to take care of him, but that included things like medication and that sort of thing. But that’s not what this is. Is that correct?
AREF: It’s nothing about medication. Nursing staff takes care of medication. Now, I think occasionally a volunteer has said they look like they’re in stress. Could you come in and assess the patient? You know, because these patients cannot advocate for themselves. So that could be helpful, but it’s really. More about the human experience. It’s really more about that human to human contact between a person who is at the end of life and someone just being there for them.
HARDWICK: How do you know that it makes a difference for the patient? W
AREF: Well, I don’t have a evidence based study or anything like that. I have my experience, which may be anecdotal. It is so much better to walk in a room where you have family or people around a patient that is dying than going in and seeing them alone. Patients seem to use more medicine when there’s fewer people around. Patients seem to have more distress when there’s fewer people around. And I just the other day, I was taking care of patient who had a stroke. It was a phasic. Aphasic means they can no longer produce language or understand language, and one of the volunteers was there with them, and every time she took her hand off the patient’s shoulder, the patient would start to move and squirm and be uncomfortable. She put her hand back in the shoulder, patient would stop doing that. So somehow communicating with the patient, just through touch, kept her more calm, more at peace and with less symptom burden.
HARDWICK: So for the volunteers, how does it make a difference for them?
TOLIVER: I hear from volunteers that it helps them to feel a real human connection to an individual who’s in those final stages of their life. It also just helps to make them feel like they’re making an impact, or a true impact with their time by being there in those final hours, I personally volunteered for no one dies alone. Vigils and the experiences vary depending on the patient and their situation. There was one gentleman who I remember that he loved to fish and he liked to talk about his experiences in the past with his friends going on fishing trips, and that they like to have fish fries, and all of the types of things that they did. So I just listened, and I did have a frame of reference, because a family member who really loves fishing, so I shared some of those experiences I was listening to him share in another experience, the patient wasn’t responsive, at least not responsive to conversation. So we played music, also sounds of outdoor, outdoor types of sounds that made that were calming during that during that time. So it just really depends on the patient and their particular circumstance, you know, and how, what stage of the dying process that they’re in.
HARDWICK: Some people don’t even like to talk about wills or the end of life plans, and some people who may be listening to this may feel like that sounds depressing. How do you talk to volunteers about that or families that?
AREF: Volunteers want to make an impact with their time. And what better way to make an impact with your time than to make a difference during that person’s final days and hours by being present for them, by listening to them talk about the things that they want to talk about, or if they don’t want to talk or unable to talk, just making sure that they have somebody there for them during that time. Death is not an if it’s a when we have a finite amount of time on this planet and a finite amount of time with our family and loved ones, and as a palliative care physician, the hospice physician. So my most rewarding interactions, and some of the best work that I’ve done, is with patients that are nearing the end of life and the patients that have died, and to be part of that experience, to support them and to help them. There’s probably nothing more rewarding my life than than being a dad. Is probably the only thing that says rewarding for me. But one of the things is by walking with death and seeing death and being involved in death, your life will become richer because of it, because things become so much brighter when you realize that this is finite and it can be taken away in a moment, in a heartbeat, and so being aware of that and not shying away from death will give your life greater meaning and greater value for patients.
HARDWICK: For patients, is NDA something that they can ask about, or if they are in, you know, situation where they have a terminal disease?
AREF: You know, I’ve never had patients that have asked for it, because people are I’m almost embarrassed about being alone. They’re almost embarrassed about being shy. So I’ve often talked to the nursing staff saying, who’s coming to visit them? Oh, no one. Have we talked about activating or no one dies alone? Program also, we also call it a caring presence, about coming to sitting at bedside. And sometimes like, oh yeah, that’d be a great idea. Like, oh no, you just keep missing the family they’re in here. Like, you know they’ll be in here a little bit. A little bit. And so very rarely, I’ve had patients ask about it. I’ve had families ask about it. I’ve had, you know, a wife, you know, and they have no children, older couple, all their relatives are dead, and she’s like, I just want to go home and take a shower, but I’m afraid to leave. Well, maybe we can have somebody come sit with him for a while, and you can go home and get that shower and come back so. So generally more family asking for it, or sort of nursing intuition, or the chaplain has seen them, or the social worker saw them and said, there’s nobody around. Maybe we should get some to come by and sit with them and and help with that.
HARDWICK: You started out talking about there are more people living alone. Have you seen an uptick or an increase in these the need for this service?
AREF: Yes, I think there are more and more people, particularly after the pandemic, who are alone. I think we are doing a disservice to our older population by not addressing loneliness in the community and the effects it has on their health, both mental and physical and just the need for human community is something that’s an inherent part of who we are. So yes, I would think exactly that we are probably seeing more of this, and particularly as a referral hospital, where people are coming from hours away, sometimes at this point, having some of that, that backup, being the sort of that extended family that can be there and sit with them, has a lot of benefit for the patient. So we get referrals from the hospitals with their hospitals with our system send people over. So that’s as far away from as Peoria, as far down as only and then other hospitals send them here as well, too. So we get patients from all across this area, where people are traveling hours to get here. And unfortunately, when you have a loved one who is dying, your real life doesn’t pause. So if you’re a young mom who has to get home, get the kids to get to school, and dad’s in the hospital, it can be a real tension of values, right there. So it is important to understand that you can be really, really helpful, even if you don’t do any medicine.
HARDWICK: For the volunteers. Are they on call? Because you just don’t know when you may need a patient.
TOLIVER: Correct, correct. We don’t necessarily have volunteers who are on call, so they they haven’t signed up for a call time, but we do have a pool of volunteers. So that’s why we’re trying to grow the number of volunteers that we have, because every time a vigil is initiated for no one dies alone, an alert goes out to all of the volunteers who are part of that group, and the more volunteers we have, the more likely that we’ll be able to fill the schedule and not have gaps in that schedule, because, as we know, people are busy, they have things going on in their lives. So the more, the bigger the team we have working together to help accomplish our goal, the more successful we’ll be at being able to provide that consistent level of service for patients at the end of life.
HARDWICK: So what kinds of time commitments for the volunteers should they expect?
TOLIVER: A general shift for a no one dies alone. Vigil would be a two hour commitment. Typically. Sometimes it will vary depending upon the volunteer and their feelings during that time. But we try to keep the shift to two hours and but oftentimes we do have volunteers who want to volunteer more than that, but, but that’s the length of the shift.
HARDWICK: Are there any other upcoming kind of workshops or kind of events that you have for people to learn more?
TOLIVER: We do have a training session set for Wednesday, May 14, coming up. We’ll have two different times. Set for that. One is from one to 2:30 pm the other is 5:30 to 7:00 pm so depending upon when it works out best for a potential volunteer schedule, they’ll have a couple of options coming up on May 14. We’ll also be scheduling more informational and training sessions throughout the year, but this is the first one we’ve had in a little while.
HARDWICK: If you’re hearing that and you can’t make it on the 14th, what should they do?
TOLIVER: Just reach out to volunteer.services@carle.com. We work very we’re working very closely with the spiritual care team and also the nursing leadership team to make sure that it’s a good experience for volunteers and patients alike. We will add you to the next potential training time. But in the meantime, even if you miss this training, you can start going through the volunteer onboarding process, because that takes a little bit of time too to get all of those components done, so we can get you all ready and set up, and maybe even find some other similar types of opportunities that aren’t necessarily geared at end of life, but at making a difference for other patients in the hospital while we’re waiting on the next training session.
HARDWICK: What if you’re not certain you want to do this and you just want to learn more. Can they come to one of these training sessions?
TOLIVER: We welcome anyone who has any type of interest to come to the training session. If, if you decide that you that it isn’t for you after you come to the session, that’s perfectly fine. If you decide that it is, then we would love to get you started with the volunteer or. Onboarding process. Or if you know ahead of time that you just know for sure that you’re going to want to do it, we can go ahead and get you started with the volunteer onboarding. And then, of course, go to the training on the 14th.
HARDWICK: Is there an expectation of a certain age? Or do they have to been a family member or caregiver before volunteering?
TOLIVER: We would just request that they be an adult volunteer, so I’m 18 years of age or older. But other than that, as long as they go through the volunteer onboarding process and feel comfortable after the no one dies alone training that it’s something they want to do, then those are the real requirements, just wanting to make a difference for individuals at the end of life.
Editor’s Note: Mr. Toliver’s name was misspelled in an earlier version of this story. It is Toliver, not Oliver. And the email for Carle Health has been corrected.