In 2018, more than 1.5 million Americans were taken care of by hospice services in the last days of their lives. These services focus on the mental wellbeing of the patient as they near the end of life, with the caregiver typically going to the patient rather than requiring patients to travel for services.
Benton County has a local non-profit specifically focused on helping people by offering both hospice and palliative services. One member of their team agreed to sit down and discuss this.
TCA: I’m Sally Lehman, and I’m with The Advocate. Unfortunately, the idea of death has been something many of us have dealt with. One local organization has made it its mission to take care of people as they approach the end of their lives. Today, we’re speaking to the Director of Development, Marketing and Outreach for Lumina Hospice and Palliative Care, Angela Hibbard. Thank you for being here today, Angela.
Angela Hibbard: Of course. Thanks for inviting us.
TCA: Previous to working with Lumina, you were the Editor-in-chief of the parenting magazine Mom. What led you to change careers so significantly?
Hibbard: I think like most people that you would find here at Lumina, I had a personal connection with hospice years ago related to the death of my mom, who, funnily enough, did not benefit from hospice care. But I discovered hospice at the time through my local community-based hospice who offered grief support.
And so that’s when I first encountered hospice and became familiar with the mission of their work and really wished I’d had that experience for my mom and for my family, and it kind of stayed with me. And over the years I had considered getting involved in different ways. So when the opportunity arose to bring my professional skills in this capacity to help further the work of Lumina, it was just really attractive.
TCA: You currently are also a trustee for the Corvallis Public Schools Foundation. How did that come about?
Hibbard: Well, I’m a mom. I have two kids in the 509J school system, and I’ve always been an active volunteer and active community member. I had been fundraising at my children’s local schools and really admired the work of the foundation and was invited to participate. I just jumped at the chance to be involved and have an impact at a broader level beyond just at the school level where my children were attending.
So I’ve been a trustee for the last four years and just really believe in the work of the foundation and the impact it has on our community.
TCA: For those who might not know, can you define hospice care versus palliative care?
Hibbard: Sure, that’s a common question.
Hospice care is actually a kind of specialized palliative care. So if you think of it as kind of an umbrella, hospice is a type of palliative care, and palliative care simply is care that is focused on quality of life, relieving symptoms, working with patients to manage their decisions downstream as an illness progresses.
So with hospice care, that is a specialized type of palliative care that is delivered within the last six months of someone’s life, where they are no longer receiving curative treatment.
Whereas palliative care can be a benefit, something that you participate in earlier in the process. You might still be receiving curative treatment, for example, but having palliative care to help assess your goals of care, help manage symptoms, just think about some of those planning questions that will help you manage as your illness progresses, both focused on quality of life.
TCA: So for hospice care, you say that you don’t do curative measures, what would that include?
Hibbard: Well, for example, if you are a patient receiving hospice care, you would no longer be undergoing chemotherapy, for example, if you were a cancer patient. So you have made a decision to no longer seek curative or sort of life prolonging treatment.
You have to have been given a diagnosis, a terminal diagnosis with a prognosis of six months or less. I gesture a little bit because, of course, one can’t perfectly predict one’s life expectancy, but the prognosis of six months or less.
TCA: And how does a person qualify for hospice care? Do they need to go through multiple doctors in order to be considered right for hospice care?
Hibbard: So there is a process on our end for admissions. But really, anyone can refer to hospice.
So sometimes you know, this question comes up. I’m not sure if my loved one qualifies, and you know none of us are clinicians, so it can be really difficult to determine. And the advice I would give anybody is to call. We often do assessment visits, and it might be determined that a patient doesn’t quite qualify for hospice yet. Sometimes they can then benefit from palliative care or at least receive sort of a baseline assessment so that, if things change and we can counsel family on [matters such as] ‘here are some things to look out for that might indicate that there’s a significant change in your loved one that might mean that it’s time to call us again.’
So anyone can refer – your physician, a loved one, your caregiver. And then when you’re referred to Lumina or another hospice provider, we go through an admissions process that determines or confirms if you are ready or eligible for hospice.
So I would just always advise people, if you’re not sure you just want to learn more, to reach out.
TCA: Lumina’s services are paid for by insurance. What does that mean for someone facing the end of life but lacking insurance?
Hibbard: So we are a community-based, non-profit organization. We’ve been part of this community for over 40 years, and that allows us to really make a commitment to the community to not only serve our hospice and palliative patients, but also to provide a resource for the entire community through things like our grief support groups, support for caregivers, extensive education.
And the reason I bring this up is we also make a commitment to provide hospice care for those who do not have insurance. So, many of our patients, of course, qualify for Medicare. Hospice is a benefit of Medicare, and so many of our patients will qualify through Medicare or through another insurance. But we are able to provide charity care to those who are not insured, and that’s simply because we have the generous support of our community that we’re able to make that commitment.
TCA: Looking over the web site, your staff seems to be primarily female. Have you found that women tend to be better able to offer this type of care?
Hibbard: I don’t know about that, I was actually just thinking about this right before this call because I found out one of our nurses, who had to take a short leave, is returning next week. Who’s a male. We have two male nurses. We have a male [doctor], we have a male chaplain. And but we are, of course, predominantly a female organization, as I think is pretty common in caregiving types of practices.
I don’t know whether women are better wired for this care or not. I’ve seen just incredible passion and care and support from both men and women in this field.
You know, I think that’s a bigger question, a societal [or] cultural question around why maybe sometimes we think about women more in terms of caregiving, even in non-professional roles. We find that women tend to play more of that caregiving role. Of our patients, it is more often a woman, whether it’s a daughter or a sister or whomever is the primary caregiver, but I don’t know that they’re necessarily better positioned to do that, it just happens to be the way it is.
TCA: How are family and friends caring for the patient cared for by your organization?
Hibbard: Our mission is to provide compassion, care, and support to those in our community facing end of life. And really, the way we view that mission is broad. It is not simply about the patient facing end of life, it’s about their family, their loved ones, their caregivers and our broader community – those of us who are mourning the loss of a loved one.
We are impacted by end of life. So if you live in our community – in Linn and Benton County, and you are grieving the loss of a loved one due to a death, that person might have died in another part of the country, it might have been years ago, but something is triggering your grief with no connection to hospice. We are here to provide grief support to you, because that is part of the end of life process and that is our commitment.
And for our patients and their families, hospice care really is an integrated, comprehensive care. I think, really one of the only places in our healthcare system where you can witness true integrated care model, and that is focused on the quality of life and relieving pain for patients and family members.
And so to do that, we have care teams for each of our patients that include a nurse case manager as well as hospice aides. But they are also social workers, chaplains, other therapies for patients – massage therapy, pet therapy, and programs to support the caregivers. So it’s really about treating the whole family, loved ones and caregivers, not only the patient.
TCA: What happens if a patient doesn’t have a safe home space for their hospice care?
Hibbard: So this happens sometimes. I think more often than one might realize. We have patients come on our service who really don’t have their basic needs met, and we really believe that everyone deserves dignity and respect and comfort and care at the end of their life, regardless of their socioeconomic status or otherwise.
It’s pretty hard to have dignity at end of life without some basic needs, like a clean, comfortable place to sleep or food or personal hygiene items or just the means to even connect with family members or loved ones. And so sometimes we do care for patients who come on our service without these means and our social workers collaborate and partner with a lot of other services in the community to bring assistance.
Of course, when you’re at the end of your life, days matter and all of us know that it can take time to connect with some of these other services and provide food and whatever it happens to be. And so again, we’re incredibly fortunate, because of the support of our donors and the community, that we are able to step in. That’s one of our commitments to kind of help fill those gaps. When patients don’t have those basic needs met, whether it’s during the heatwave recently with these acute high temperatures and a patient may be living in a [non] satisfactory living situation during those temperatures, and being able to give them some temporary housing. Recently we had a patient who just didn’t really have any adequate bedding. And it’s really hard to manage care and keep someone comfortable and really deliver the best quality of life that they can have for their last days if they don’t have adequate bedding.
So being in a position where we can provide that – where teams can provide that – is just really a gift and something that we’re really grateful that the community supports us so that we can do that.
TCA: Where would a person who is houseless be set up for hospice care at this time?
Hibbard: So we have had [those] situations. Like I said, we work with community partners to help find solutions, but sometimes there are these stopgap measures that we have had – situations where we’ve had to maybe put someone up in a motel for a few nights while we’re making… arrangements for them that are longer term. Sometimes it’s about supporting them until a loved one can be contacted and arrangements made. Sometimes people are estranged from their families and it can take some time to make those connections and work those things out. And we want to be able to be in a position to provide support while that’s happening.
TCA: What is Lumina’s policy concerning non-FDA approved pain management, such as the use of cannabis?
Hibbard: You know, that’s a good question, and I think I would probably defer to one of our doctors to answer that.
I do know that we explore pharmacological pain management. We explore non-pharmacological pain management in terms of alternative therapies and such, over-the-counter pain management. But I don’t know that I’d want to speak specifically to the cannabis question.
TCA: What is the policy at Lumina concerning assisted suicide?
Hibbard: Well, we refer to it as MAID – medical aid in dying.
Lumina has a neutral policy. And by that, [I mean] we don’t take a position. That is the decision for a patient to consider with their family. We’re really about enhancing quality of life for the days that you have remaining. And so the position that Lumina has is one of neutrality. I think that’s a private decision that they make and have available to them in the state of Oregon.
TCA: Have there been more people looking for your services since the onset of the COVID pandemic?
Hibbard: Yes, I would say so. I think you cannot work in health care during a public health crisis without being impacted, and I’d be lying if I didn’t say that the COVID pandemic has stressed our care in ways that we hadn’t experienced before.
But also our care is needed now more than ever. Supporting people at what is already a very challenging, stressful, anxiety-producing time, regardless of a public health emergency, and walking with them through that process where maybe they are isolated and have not been able to see their loved ones. There was a long time, if your loved one was in a care facility, where you weren’t able to visit. Maybe not connecting with family who would have otherwise come into town to help with caregiving. All of these things, and just the general anxiety and the uncertainty of the pandemic, have really increased the need for the type of care and support that our teams provide to patients and families.
We’ve definitely felt that.
We’ve also seen an increased need for our grief support services or at least increased requests for our services. Our family and children grief group has the highest attendance that we’ve had. And these are all – we’ve been delivering online since the pandemic, or via phone and other means, but not in the traditional in-person group setting that we used to have. And we are finding, like I said, an increased need for grief support, support for caregivers, which we provide. I would say, yes, we are seeing people reaching out and the need being a little more acute.
TCA: How have your services changed since COVID has been in place?
Hibbard: You know, like so many organizations, we’ve had to pivot pretty quickly on things and then also just continue to evolve and adapt.
We still have, of course, in-person face-to-face contact with our patients and family following infectious disease protocols since before COVID, and it’s kept us safe throughout, thank goodness. But also then using telehealth when we can to provide contact for patients in between visits. And providing technology to patients who are in rural settings with less coverage, or just don’t have access to technology to help them have better access both to their care team, but also to their loved ones.
And then for our community programming, I mentioned that we’re holding our grief support programs online and our caregiver support programs. And during COVID, we launched an education program called the Illuminating Series, which we’ve been holding monthly online over Zoom, and these have to do with a range of topics related to aging and end of life. Our next illuminating series on October 18 and that is Dr. Mari Goldner, who is one of our on-call physicians sharing about healthy sleep habits as you age and particularly sleep during stressful times, which is something I think we can all relate to.
[Note: The next of this series will be on November 16, at 12:00 p.m., with Molly Murphy talking about supporting veterans at the end of life.]
Other topics are anticipatory grief, or maybe advance care planning, or how to start a conversation with a loved one around end of life – just kind of a huge range of topics. We launched that during COVID, and really it was inspired by a webinar we hosted at the beginning of COVID, where we had over 180 participants, and we felt that we always had an extensive education program, but this was a new way to reach people by being able to reach them virtually.
So, we really look forward to welcoming people back to our community center here downtown and holding some of these education programs in person. But I think we will always continue to offer some element of virtual programming, because it’s a way to reach folks who just are unable because of time, or maybe they don’t drive, maybe they’re a caregiver, and it’s really hard for them to get out of the house because they’re caring for someone.
So it’s one of the hidden gifts of COVID that I think we’ve all found is that we were forced to do this, but it’s really opened up a new way of reaching more people in the community.
TCA: The vaccine mandate set by Gov. Kate Brown – it’s on October 18 – has that affected your services or your environment at all?
Hibbard: It’s just one of many things that has impacted the environment over the last 18 months. We’ve had a nursing staffing shortage, crisis, before COVID. It’s become more so during COVID. I don’t know, there’s a whole host of reasons, maybe as people are leaving the industry. We have a shortage of staffing even outside of healthcare. So I think the mandate is kind of one other element in the mix.
We’ve been following all of the federal, state, and local COVID guidelines from the beginning, and so this is just one other guideline for us to follow and implement.
TCA: Well, thank you to Lumina for the remarkable services they provide our community. And thank you for your time today. Angela Hibbard of Lumina.
By Sally K Lehman
Do you have a story for The Advocate? Email editor@corvallisadvocate.com