Palliative Care and Hospice Conversations for Dementia Patients, Families and Caregivers

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NATHANIEL CHIN: I’m Dr. Nathaniel Chin and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimers Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Today's guest on Dementia Matters is Dr. Kate Schueller, an assistant professor in the division of hematology, medical oncology, and palliative care. As a clinician, her primary focus is on palliative care for patients with life limited diagnoses, including cancer, Alzheimer's disease, and other chronic conditions. Dr. Schueller, welcome to Dementia Matters.

KATE SCHUELLER: Thank you very much for having me.

NATHANIEL CHIN: Let's start by having you explain to us what is the difference between palliative care and hospice?

KATE SCHUELLER: I think I'll start by answering what is palliative care. Palliative care is specialized health care that is for people who have some sort of serious illness. They're living with a serious illness diagnosis. The care is really focused on how do we help somebody live as well as they can with the illness that they have. We focus on relief from burdensome symptoms, and stress of the illness, as well. We're really an extra layer of support while somebody is going through the course of their illness. 

NATHANIEL CHIN: So, it's a pretty broad category? 

KATE SCHUELLER: It is. 

NATHANIEL CHIN: A lot of people would fit under the criteria for palliative care. 

KATE SCHUELLER: That is the case. Yes. A lot of times people think of palliative care for patients with diagnoses such as cancer, heart failure, kidney disease, things like that, but certainly we also see the tremendous opportunity and need for patients who are living with dementia. 

NATHANIEL CHIN: Okay. Well, it seems like it'd be an incredibly helpful service. I feel like in clinic people often mistake palliative care for hospice and they get very defensive when I start bringing up this conversation. 

KATE SCHUELLER: Yes. While they are very similar, there is some distinct differences between the two. The main key is that both palliative care and hospice provide comfort, focus care, but palliative care is involved at the time of diagnosis for somebody with a serious illness, whereas hospice generally is more the focus of care for patients who are nearing the end of life, typically within the last six months of life. 

NATHANIEL CHIN: As you describe it, it seems like palliative care and hospice are more of a consultative role, meaning they're not the primary service or the primary care team. Or is that incorrect? 

KATE SCHUELLER: That is correct. Typically, palliative care is an extra layer of support. We work alongside a patient's other providers. They have a primary care doctor that is still extremely involved in their care, but palliative care is there to really support the patient and the family, as they traverse this illness, trying to fill in the gaps that may be there. 

NATHANIEL CHIN: How does one get referred to either palliative care or hospice? 

KATE SCHUELLER: Palliative care, actually, a lot of times patients will be referred by their primary care doctor. The doctor will acknowledge or recognize that there are some significant stress or burden that their patients are going through. It may be symptoms that are very challenging, sometimes pain being one of the more common ones; mood disorders, is another example; or there's some other unmet needs, significant spiritual distress, social distress, caregiver burden, things like that that are identified by the primary care doctor. They may reach out to palliative care to get a consult to have us involved in this patient's care. As well, sometimes patients come to us just because they've heard about it online or they know about it from somebody, a friend or a family member that has received it. They think that this type of care, this additional layer of support, would be helpful for them as well. So, they'll reach out to us that way.

NATHANIEL CHIN: There are certain criteria for the hospice piece of this? 

KATE SCHUELLER: That is correct. Yes. For hospice, it’s a little bit different. Hospice is a Medicare benefit that requires two physicians saying that if this disease entity follows its usual course that we would not be surprised if this person were to die within six months. That is really a pretty big distinction between hospice and palliative care. 

NATHANIEL CHIN: You mentioned it's a Medicare benefit. This is not an additional expense that our patients would have to pay?

KATE SCHUELLER: That is true. You actually also asked about who would become primary [provider]. Sometimes with hospice, most often, primary care doctors remain very involved throughout the hospice experience, but also the hospice team does provide that extra layer of medical support, too. 

NATHANIEL CHIN: So you don't lose your doctor? 

KATE SCHUELLER: You never lose your doctor.

NATHANIEL CHIN: In the world of dementia then, how can a palliative care provider help someone? 

KATE SCHUELLER: Palliative care, as we have learned from other diseases, for instance, cancer and heart failure, the earlier palliative care can get involved, the better. I think that is especially the case for patients with dementia where we know that over time their ability to participate in conversations, to understand what their disease trajectory might be, their path, as well as to try to get a sense of what their hopes and wishes might be as they progress through their illness [will decline]. The earlier palliative care can get involved and start to initiate some of those early conversations about expected path and what patient wishes might be, the better. 

NATHANIEL CHIN: That makes sense to me. I feel like our population is increasingly more aware of what is cognitive impairment, dementia, and so forth. As a result, they're coming in sooner. Once I have that diagnosis, I think most people understand that there are going to be declines over time. But what you're saying too, which fits this, is then getting those conversations in early while you are in your best shape really empowers you to drive your own care going forward. 

KATE SCHUELLER: It does. Not only does it empower you to drive your own care, but I also think it helps your family and caregivers be aware of what your wishes would be under certain circumstances when down the road you may not be able to express them yourself. That really helps families and caregivers down the road when they're facing difficult decisions, to know that they are acting as somebody's voice in a way that they had previously described. 

NATHANIEL CHIN: For family members who want to mention palliative care to their loved one, is there a certain approach that you would recommend? 

KATE SCHUELLER: I would really try to describe it as something that can be offered at the same time as their current care that they're getting, and really just that extra layer of support. It doesn't change anything, but it really helps having these earlier conversations upstream. I think normalizing it and identifying that this is a difficult illness that the patient and the family are all dealing with, and the earlier we can get more help onboard, the better. There is actually a really great resource, the conversation guide. It's specifically geared towards patients and families with dementia and it's a nice resource for families and patients to guide these earlier conversations. They talk a little bit about what might happen in the future and how you might want to face certain questions. I think it's really a good resource for people in that it's more specific to patients with dementia. 

NATHANIEL CHIN: Wow. I didn't know that existed. The conversation guide, is that free? 

KATE SCHUELLER: It is free, it's online, it's available, you can look it up. It really just helps lay the foundation for some really important early conversations. I think, a lot of times, with palliative care early on, we just have these light touches with patients and families, and as the disease progresses, sometimes we get more and more involved in care. 

NATHANIEL CHIN: You mentioned something, too, that I think is important to clarify, which is that palliative care doesn't provide home health aides to go into your home, which I think is a common misconception. It helps with planning, and it may help with finding the right resources, but people aren't going to be getting more support directly in the home.

KATE SCHUELLER: That is very true and thank you for clarifying that. That is a distinction from hospice, which actually does cover some of those in-home supports, but palliative care does not. We're mostly there for conversations, extra support, but it's not like a package. 

NATHANIEL CHIN: Okay. If you could clarify then in hospice that you actually can get some in-home support with hospice. 

KATE SCHUELLER: That is correct. Hospice is, as we mentioned, a Medicare benefit. What they do provide is not 24 hours a day support for seven days a week, but they do provide an interdisciplinary team. We've got a social worker that's involved helping to connect families and patients with resources. We've got nurses that are available 24 hours a day, seven days a week. They will do home visits frequently, often on a weekly basis. There are nursing aides, as well, that can come and assist with some tasks, such as bathing, things like that. Not every day, but often, several times a week. 

NATHANIEL CHIN: That seems like a pretty incredible benefit. As far as home palliative care visits, does that exist? 

KATE SCHUELLER: They do exist and they look a little bit different wherever you go. Every local culture has a slightly different way that that looks. There are some organizations locally that will do these in-home consultations. They're just consultations only and they will make recommendations to the patient's primary care doctor, which can be very, very helpful. That's probably the most common form of an in-home palliative care consult. It is more of this general discussion and making some suggestions about medication changes but not actually taking over and making those changes, rather communicating those directly with their primary care doctor.

NATHANIEL CHIN: But then there are also palliative care clinics? 

KATE SCHUELLER: That's true. I'd say the bulk of palliative care is received either in the hospital setting – a lot of times we get involved in more of an acute situation, if patients have an infection or some sort of an injury – or a lot of palliative care visits happen in the clinic setting. 

NATHANIEL CHIN: Then with your palliative care hat on, I'm wondering if you can provide some steps that families could take to plan for these services in the early or mid-stages of dementia so that they feel prepared, as well as the person with dementia?

KATE SCHUELLER: Yeah. Sometimes I think what they should prepare for is to just sit down and have a conversation about what the expected path might be so patients know what to expect as they progress with their illness. I think that's still in the earlier phase, but I also think it's important to think about what are some of the potential sentinel events that might happen down the road. Those sentinel events might include potential infections down the road, or even if somebody were to fall and break a hip, that would be a big moment, a big potential change in somebody’s health at that time. Those are sorts of things that we can start to think about in the earlier stages of dementia so that we've got an idea of how somebody would want their care approached down the road. So that's sort of in the earlier phases. 

NATHANIEL CHIN: How can families navigate palliative care and hospice services in that late stage of dementia when this timeframe for end of life really is ambiguous and unpredictable? 

KATE SCHUELLER: It is, and it's a difficult time because it is so unpredictable. I think one of the things that we can do in palliative care is help facilitate timely referral to hospice so that we are hitting the mark at the right time for patients and families, getting them enrolled as soon as they are eligible. I think that's one of the things that we can do to help families at that point. 

NATHANIEL CHIN: That's yet another advantage of being involved with palliative care even earlier upstream in the disease, is that really the experts in this will be watching closely, and when that time comes, having the conversation. 

KATE SCHUELLER: Exactly. I think we are able to combine our expertise just by working with other patients and families facing these difficult situations, along with our own personal expertise. As we've gotten to know a patient and their family, we recognize these changes more because we have this close relationship with the patient and families. 

NATHANIEL CHIN: Palliative care and hospice also deal with symptom management in a way that I think that other providers and healthcare experts really just don't have the training or the experience doing. I wonder, in particular, what kind of symptoms do you see or feel that the other providers, like myself, could improve upon? 

KATE SCHUELLER: I think one of the more common symptoms that tends to be under recognized, and therefore undertreated, is pain. I think it can be difficult to know when somebody is experiencing pain when they're unable to tell us. The cues that we typically use for people are no longer an option, so we have to be much more in tune with things. If we start to notice changes in behavior, changes in appetite, certain facial expressions, things like that, we need to be tuned in a little bit more to that. There might be some pain. A lot of patients obviously with dementia have a lot of other health issues going on. They often have arthritis. They have other conditions that can cause pain. We need to be thinking about that and realizing, okay, hopefully we get to know a patient really well, we start to read their cues. There's this idea of having a pain signature, that people have their unique way that families start to know when something's wrong. A lot of times that can clue us in that perhaps there's some unmet pain needs. 

As far as treating pain, that's another step. We usually do the same things we do with all patients, which is try to optimize the non-medication way – sometimes massage – depending on where the pain is or what's going on, that can be very helpful. But ultimately, no, sometimes we may need to add some medications. We start with more typical over the counter medicines, like Tylenol, perhaps ibuprofen. There's actually a lot of topical medications, gels and patches, that can be quite helpful for patients that I think we sometimes don't think of right off the bat. Eventually, there may be a time when that pain can best be managed by starting a stronger pain medicine. Sometimes people are reluctant to do that because they don't want to make confusion worse, but I think we know that sometimes confusion can actually be worse when pain is out of control. If we can manage that pain, get it under better control, even if it means starting a stronger pain medicine, we may actually see some improvement for patients and not more confusion but actually less and kind of going back to more of the baseline. 

NATHANIEL CHIN: Which can be counterintuitive to a lot of us that are fearful of adding more medications to something.

KATE SCHUELLER: Indeed. Yeah. 

NATHANIEL CHIN: Then on the flip side, de-prescribing, this idea of removing medications is also really important. A question that I get frequently in clinic is when is the appropriate time to stop the medications I'm using for the dementia. There are two [medications] in particular and I'm wondering what your thoughts are? 

KATE SCHUELLER: Great question. I think that a lot of times we look at de-prescribing when the burdens of taking the medications seem to outweigh the potential benefits. For some people, they do experience significant pill burden and so we kind of focus on what's most helpful. What we know from the research is that some of these medications that are aimed at trying to slow the progression of dementia, actually once somebody reaches a more severe stage, they're no longer as helpful. Then it does make sense to take away those medicines that are aimed at helping them feel better, that are not in aimed at improving their quality of life, when they're no longer effective. 

NATHANIEL CHIN: I would like to end with my own personal experience with hospice, that it was this amazing service during the time of caring for a loved one. But there is also a great service after a loved one passes. I don't think a lot of people know about that. If you could share a little bit about some of the things that hospice and palliative care specialists offer in regards to a person passing and grief. 

KATE SCHUELLER: From a palliative care perspective, we always reach out to families after their loved one has died, just offering our support, letting them know that we're here as well. But one of the beautiful things of the hospice benefit is that there is this one year period after somebody has died where they will provide bereavement services to the families. I think that's been a very important piece of what hospice provides, especially for patients with dementia and their families, because we know that the caregiver burden is so significant and different than for other disease entities. I think that there's a lot more that gets processed in that year after their loved one dies. Hospice is great at being able to provide that support.

NATHANIEL CHIN: Dr. Schueller, I'm so grateful for what you do, and thank you for being here on Dementia Matters. 

KATE SCHUELLER: Thank you very much for having me.

NATHANIEL CHIN: Dementia Matters is brought to you by the Wisconsin Alzheimers Disease Research Center. The Wisconsin Alzheimers Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veteran’s Hospital in Madison, Wisconsin. It receives funding from private, university, state and national sources, including a grant from the National Institutes of Health for Alzheimers Disease Centers. This episode was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at www.adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening