 Aging gracefully, and I'm grateful you're here. Hospice, but I'm not ready to die. As a chaplain in Bristol Hospice, I have heard this comment before from patients and from as they have engaged in discussion with their family members. And so it raises the question, are there alternatives as we age gracefully that will help us age gracefully when we have in fact some kind of illness that we need to manage? What kind of resources are there for us to help us manage those illnesses at this time of life when we're not ready to die? And to help us answer that question and explore those options, I have asked Ernelle Roke to join us in our discussion today. She works with Bristol Aime and I welcome you, Ernelle. Thank you for coming and joining with us. Thank you, Larry. I'm Ernelle Roke. I am the palliative care coordinator for Bristol Aime. We are part of the mother company, Bristol Hospice. I am a local girl born and raised in Hawaii and I have worked in family medicine for the past 22 years. Remarkable, that is, that's great. So let's jump right into it. Help us describe to us what Aime is. What does it stand for as an acronym? What are we looking at from Bristol Hospice Company in terms of Bristol Aime? Bristol Aime is short for advanced illness management. We are the palliative care program that actually takes patients that have illnesses that are life-threatening but they still wanna receive treatment. They still want quality of life and they still wanna be around their family and friends. We come in as our nurse practitioners, our licensed social workers and chaplains if we need to call on you and we support not just the patient but the family to make sure that they're receiving everything they can to be comfortable as they fight this illness. What does palliative care mean? What does the word palliative mean? It focuses on the relief from physical suffering. We take care of their pain management. We also make sure that they're still getting treatment and being able to do all of the things that they continue to do and can continue to do as they fight their illness. Well, do you work with them? Do you work with their PCP if a family comes in and their loved one is in pain and they need care? How does the relationship work with their own PCP? We collaborate care, not just with their primary care physician but also with their specialist. It could be their oncologist or pulmonologist, neomphrologist. We hold their hands together and we make sure everyone's collaborating care and on the same page. So all of the patient's needs are being met. So the word coordinator for you really embraces the totality of what you do. You coordinate the care with a whole system of care that exists for them. Yes, it takes a village and we make sure we incorporate everybody in that village, especially social work to make sure that we're also preparing the family. So they know what this patient is going through, what this patient gets to look forward to and the different means of support that we can provide. And if it's something we can't provide, we also refer them out to someone who can help them to make sure that all of their needs are being looked at and met while they face this illness. Oh, that's excellent. That's very much in line with the hospice philosophy. It's like a, it's almost like a feeder track if you need me. It is, we hold the patient until the patient is ready to get into hospice. We make sure they exhaust all the different avenues they have for treatment. And when they're done with treatment and saying, hey, my body is said enough, we hand them over to our hospice team and make sure they're cared for. Now, do some get better and graduate to? Yes. We continue to hold their hand throughout the illness, but we also continue to be their provider when they're healthy and better and we just see them less often, but we also make sure they know they have options and we are here to share those options with them. You know, that is really wonderful. And I have known some patients who have surprisingly gotten so much better through hospice care and part of it, it seems as if the intense focus and intense attention on the patient really has an impact that has healing power in it. It sure does. And I truly believe we live in Hawaii. Culturally, we know that our families are a really important part of us and our growth. So we make sure we include the family, we support the family and we help the family go along with the illness by preparing them and supporting them. Well, how does the palliative care compare to hospice care? The full-blown hospice care? Many people look at hospice care as end of life. Hospice care is comfort care. Patient is no longer receiving treatment, has accepted what the disease will do to them. Whereas with palliative care, we do explore all options of treatments. We work closely with other specialists to make sure that they are getting the different types of treatments that their body can handle. But we also make sure that the family is included in it and knows what this patient is going through and helps the patient to embrace their illness and their growth and fight. I'm gonna ask another question because I'm on staff. How does your care differ from supportive care or concurrent care? Supportive care and palliative care is very similar. The difference is with supportive care, your medical provider provides more in-home service whereas a CNA or an RN would come two to three times a week. In palliative care, we visit you as often as we feel your need. And it could range from every three weeks to every week. On the weeks that we do not see you, we make sure our support system is there. We have licensed clinical social workers that support not just the patient but their families. So on the weeks that we do not come, we make sure our social worker comes and pays a visit to the family even if it's with a phone call. So it sounds like you're able to aim as able to customize the health management piece a little more thoroughly than supportive care Is that a good... That is a great way of saying it. Supportive care, you do get a lot more resource coming into the home more often. Supportive care also pays for a lot of the supplies that typically is not covered under your medical. That's supportive care you're saying. Yes, with palliative care, we provide you with supplies that is covered under your medical or we give you resources to different avenues where you can purchase the supplies that you are needed. Interesting. Ernelle yesterday, I was with a patient and his son and his son said, well, how did hospice care begin? What's the history? And one of the things that I draw upon is the story from Dom Cecily Saunders who was in England was treating a patient in her home. And she was a physician, she was a nurse, she was a trained social worker. She claimed herself to be a member of the Church of England in her spiritual life. And when she asked the patient, where do you hurt? The patient said, my whole life hurts. My whole life is a pain. And from that observation, Dom Saunders developed a concept of care, which was total patient care, looking at all those elements, the pain of physical pain, the pain of relationships. She said, the patient had said, my husband and son have to work. We don't have enough money to give me this care if they don't work. And so I never see them. And then the spiritual dimensions as well. And out of her really this one woman's broad range of capabilities for caregiving at the end of life, she developed an entire system and that system still guides us. It's evolved into a concept of total pain, the total pain of the patient. So part of what I hear this palliative care effort is to address again within that philosophy, to address the total pain before the time comes that the physical demise is within six months. Yes. And it is also helping the families to prepare that within a limited amount of time, you are going to lose your loved one. A lot of family members are in denial and we help them with coping skills. We help them to prepare. We help them prepare the document. So that way that when this time comes, all of the decisions have been made. You have included the patient for it's too late and everyone is aware of what the patient's needs and wants are. That is terrific. That is really wonderful. In my last session, in my last program, I was wonderfully blessed with the interview of Hope Young from Kokua Mau and Hope Young is responsible for a program, promoting a program called having the conversation. And it's an effort to enable people to have the conversation about death and dying. But what I hear this program doing is and I'm all about conversation. And what I hear this program doing is in a very substantial way of enabling the family to have the conversation with their loved one before the urgency and the intensity sets in. And yet it's very much concrete because this person has an illness and it has to be managed. Yes. And we direct the family member and the patient to be able to have that conversation together. If they don't have that relationship where they can have it together, then we sit through that conversation with them. Our social workers will sit through it, guide them through it and help them plan it out. Very good. Now, we're in a new era, COVID era. Can COVID patients get palliative care? What's your role as you see that now with COVID patients? We can help with COVID patients. We are just asking for a referral from their primary care physician. Or the hospitals have been referring patients to us. And if they feel a need that you need palliative care, they all know how to reach out to us. Our hospice liaisons are in the hospital. If it's something that they feel that is not hospice appropriate, they will encourage you to reach out to the AEM program. And they can support you and bring you through the program also. So you're working closely with the hospitals here on the island too to receive referrals? Yes, we do. Excellent. Another question that's come in from our viewers. We know there have been COVID cases in senior facilities. What about in hospices? Have there been COVID cases in hospices in Hawaii? I think this is a question that assumes that hospices are mostly edifices. And perhaps you can address that as well. We do have COVID cases everywhere in Hawaii. Our numbers have risen tremendously over the past two weeks. We do, because they are in foster homes, in residential homes, hospice is out there. COVID does not discriminate. They're in regular family homes. They're in foster homes. It's everywhere. And our hospice team is out there supporting the hospice patients that need our support. And AEM is there as well? Yes, we hold our hospice team's hand. If there's anything we can do to help, we are there. Wonderful, wonderful. So the palliative care is the sort of baby step towards hospice, but not quite yet, not quite yet hospice. Hospice, I'm not ready to die yet. Hospice, a lot of people identify hospice as I am going to die. And hospice does not really mean I'm going to die. It means I am going to have comfort. And hospice is about providing the patient the comfort they need as they go through this trying time. And so it's a natural baby step towards that to have AEM step in and resource that process. And I think the biggest part that has made AEM successful is working with not just the patient, but the patient's family and embracing both. How many patients are you on your census now? Currently I have 127 patients. Oh my word. And you coordinate the care for all of them? Yes, I do. You alone? I have two MAs, one part-time and one full-time. I have two licensed social workers, three nurse practitioners and one part-time. Ah, okay, good. Good. Yeah, wow, that is quite a load. That is quite a load. And you're saying the COVID has increased over the past two weeks? The COVID numbers have increased over the past two weeks. Our hospitals have filled. And one of the reasons that palliative care works for our hospitals is they can release these patients back home to their families knowing we'll come into the home and support the patient. Patient doesn't need to be in the hospital. Patient will be seen by a nurse practitioner at home or a licensed social worker and they can free up the beds for these COVID patients. It's a great hand-in-hand relationship with regard to COVID and the urgency of COVID and they can return home and receive the support that is adequate, I mean, highly skilled. It is highly skilled. It is highly skilled. We do have trained nurse practitioners that are out there supporting these families. But it is also, we're in Hawaii. Culturally, family is really important. It allows these families to have their loved ones at home with them. So here's a question that's come from another viewer. And again, concern about COVID that is just everywhere for us. How many people who get COVID get a lethal case? You know, I have seen the numbers in the hospitals rise a lot lately. In Hawaii, we have been very blessed that our numbers for deaths have been very low. But our hospitals are filling up and patients are getting it at a different level than they were originally. And the best thing we can do is keep our loved ones at home and safe. So what do you attribute to Hawaii's success at staying low? You know, I'm gonna attribute it to family. It's easy to stay locked down with your family than it is to stay locked down alone. And in Hawaii, we have a lot of multicultural families that will just all cohabitate together and support each other through these hard times. So the culture that's in place already is really a culture that serves health and wholeness and especially in the face of COVID intensity. Yes, it is. And we're lucky to live in Hawaii and have that inbredded into us. It truly is, yeah. I arrived three years ago at Burnell and one of the things that I was surprised about, I came from Denver, Colorado and I was surprised to find people wearing masks. And I was riding the bus a lot and I would occasionally see people wearing masks and I thought, well, they just didn't wanna, didn't wanna, they didn't wanna smell this howly, you know, just kind of. But what I learned was that the Asian culture has always had a tradition of covering their face when they're sick. And the covering with a mask is to protect others. And that's kind of inbred as well in our culture here. Yes, it's always been about thinking of the next person and making sure that if we have something that we shouldn't be sharing, we are protecting ourselves so we do not share it. Lovely. I wish our administration had taken a look at Hawaii and patterned their response according to Hawaii's experience. Well, those are the questions that we've received so far and I'm very grateful for those who have put in your interests and questions here. I do think this is an exploration again of how to age gracefully. And part of the key that I think is here that I get from this program, Ernell, is the word management, manage. I know Paley, it is important. I know, yeah, alternative is important. But manage, to manage our health and to manage it without feeling as though we're constantly victimized by something. Seems to me to be a real strength that AIM brings to families. What do you think of that? It is, I will tell you families in Hawaii and you described it with your patient. They worry about my family members, the burden I'm becoming on them and educating them that we're not a burden, we're here to support each other and hold each other through this hard time and if we all band together, we can get through it. Wonderful. Now, so let's look into the future for a minute, Ernell. I know you're not as, you don't have a magic ball and you don't have a visionary. I don't suspect that you're psychic about all this, but nonetheless are thinking about into the future. What are you anticipating with regard to COVID on the island? I am anticipating a lot of people living in fear and not knowing what to do. And I feel that if we can educate and let our families know that, hey, stick together, stay at home, don't be out and about, don't share other people's germs and just be cognitive of what you are doing and what you are bringing into your home that we'll get through this and we'll get through it quick. And I think for Hawaii, sorry, Larry, I think for Hawaii we'll get through it even faster because culturally we are very conscious of the next person. That is very encouraging, Ernell, thank you. And it's encouraging to know that that, as you have said, is somewhat successfully already integrated into our culture. And if we'll just follow the directions that are given us from the health professionals, it's not that far away from what we already do. And it's there that we already have. Ernell, I'm so grateful for you and I have to confess, even though I'm on the staff of Drissel Hospice, I have not known about AIM. This is my first introduction to it and I am so impressed with this program and with your dedication and all that you seem to bring to this at this time, it's just remarkable. So thank you very much. Thank you. And I wanna say thank you because I remember reaching out to you. I had a family who wanted to join AIM and they had contacted us on a Friday night. The family was gonna discuss the program and on Saturday their patient passed away. And I remember reaching out to you and saying, can you please go and visit this family? And not once did anyone from Bristol Hospice say, hey, this isn't our patient. You got in your car and I remember you calling me when you were outside of the family's home. I was lost. Yes, but that alone is what family is about. And in Hawaii, we don't have to be blood related. We are family. Hanai, Hanai, I think is the word I read today. Yes. Not Hanai. Well, good. This has been really enriching and next time I hear somebody say, Hospice, I'm not ready to die. You know where to come. Referral. Yeah. And I say, well, you don't have to. We're not ready for you to die either. No, we need everyone still here because we need to unite together and especially our older generation. We need to share our monologue with the families that we have and make sure our younger generations know that we need to stick together. Thank you very much. That is such an important word for us to hear, especially in these days. Let me say then to our viewers, thanks again for watching. Every two weeks, elderhood aging gracefully will come for you to explore those things and resources on our island and the experience of aging that will offer you opportunities and offer to you insights into how your aging and the aging of your beloved Hanai can be graceful. If you have other interests in hospice care or in aim, please contact Bristol Hospice Hawaii. The website is Bristol Hospice-Hawaii.com and that's the best way to get ahold of all the resources that you may need. And, Ernelle, that would be access to you as well? Yes, it is. We do share the same receptionist and we will make sure that either way, some programming, Bristol will help you. Thanks so much, Ernelle. Thank you and everyone have a great day and be safe. And to all of you, Aloha. Aloha.