Aging with Altitude: 4 Home Health Care, Palliative Care, or Hospice?

Audio 

00:00 

You’re listening to Studio 809. This is what community sounds like. 

Cynthia Margiotta: 

00:15 

Hello, and thank you for listening to Aging with Altitude, a podcast series sponsored by the Pikes Peak Area Council of Governments Area Agency on Aging that aims to highlight issues and resources that affect our older adults in our community. My name is Cynthia Margiotta and I’m here with Dr. Chris Ruskey. Dr. Ruskey is a board certified family physician, and is also certified in hospice and palliative medicine in the U.S, and by the Royal Society of Medicine of New Zealand and Australia. He has provided care in rural and urban settings in the U.S. and abroad, including a small group practice, assisted living, nursing facilities, and hospitals. He has served as medical advisor to home health and skilled rehabilitation services. For the past 16 years, Dr. Ruskey has dedicated his professional time to the fields of palliative medicine and hospice, serving as medical director for both community-based and hospital-based services. He has volunteered faculty for the education of medical students, nurse practitioners, and family medicine residents. In addition, Dr. Ruskey is involved in several community collaboratives to improve transitions in care and community understanding and best practices in the application of palliative care for our community. Today’s podcast theme is supportive and palliative care. What is it? And how could it benefit me and my loved ones and my parents? Thank you, Dr. Ruskey, for being a part of this podcast. Now I have a few questions for you, if you don’t mind, sir.  

Dr. Ruskey: 

02:03 

No, that would be wonderful. Thank you for that introduction and for allowing me to participate in the podcast. 

Cynthia Margiotta: 

02:10 

 So, what is supportive and palliative care?  

Dr. Ruskey: 

02:13 

Supportive and palliative care is whole person care, which is generally focused on symptom management such as pain, nausea, not sleeping well, or perhaps poor appetite. This may include care planning, such as advanced care planning, attention to mood, anxiety, depression, shoring up a person’s supports and resources or addressing spiritual concerns. This whole person approach to care has been shown to improve a person’s quality of life and function and they do better with whatever treatments they’re receiving to treat their underlying disease. So for example, if the person is being treated for cancer, in order to best tolerate the treatment and benefit from the treatment of their cancer, they do better when their symptoms are well controlled like when they have good appetite, when they’re not suffering from pain, when they’re able to maximize their function. And you can see similar benefits for people who may be suffering from conditions such as heart failure, heart disease, neurologic disorders, and we can talk more about that later.  

Cynthia Margiotta: 

03:21 

What are the differences between palliative care, home health, medical home health and hospice?  

Dr. Ruskey: 

03:28 

I’m glad you asked Cynthia, people get very confused about these different services and how to best utilize them. Home health care generally focuses on short term goals, often for a specific medical issue, such as for a person returning home after surgery from a broken hip. And it uses skilled interventions to maximize independence. This would be things such as physical therapy, occupational therapy, nursing, CNAs, and social workers. It requires that a person be homebound and the idea is to try to help get that person rehabilitated from whatever event led to their decline in health. Supportive and palliative care is ideally suited for patients with complex illness, such as advanced disease, multiple hospitalizations, that type of thing. It’s a whole person approach to care, meaning it addresses mind, body, and spirit alongside the patient’s regular care team. We visit people in a clinic, in a hospital, or in home settings. And this care could be provided at the same time as home health care. Hospice is kind of like palliative care, it’s a whole person approach to care. It provides an entire range of palliative care type services 24 hours a day, seven days a week. This includes a prescriber, usually a physician or nurse pactitioner, nursing care, social worker, chaplain, CNA, and sometimes a volunteer, and bereavement services. Hospice requires a limited life expectancy, usually less than six months. In order to get hospice care, a primary attending can continue providing care. Or you may have a prescriber from the hospice who helps provide most of the care or direct most of the care. Hospice care can usually not be provided at the same time as home health care.  

Cynthia Margiotta: 

05:39 

So, home health care is generally designed to help get folks through an acute illness. Palliative care and hospice sounds similar in that they both take a whole person approach to care. Please clarify how to do these two services and how they differ, specifically.  

Dr. Ruskey: 

05:59 

Yeah, you bet. This is confusing for a lot of people because, as you mentioned, palliative care and hospice both take a whole person approach to care. They both address mind, body and spirit but they do vary. I wish this was a video so I could diagram this out. But if you think of this as a picture, and you draw a big circle and that circle encompasses this whole person approach to care, again, mind, body, spirit. Palliative care is the big circle. And within that circle is a smaller circle, which would be hospice care. And hospice care is very specialized, it’s a very specialized type of palliative care. It’s  specifically designed to address the needs of people who appear to be in their last six months of life or so. Whereas palliative care, generally, could be for anybody who has a need in any one of these areas. Again, it could be a physical problems such as pain, and emotional difficulties, such as depression or anxiety, spiritual issues, such as wondering, you know, why is this happening to me, why now? Or maybe they need some additional supports to help them get through a difficult illness or time in their lives. In any case, palliative care can address all of those, but not necessarily for folks with limited life expectancy. 

Cynthia Margiotta: 

07:35 

Do they have to have a doctor referral to get into palliative care then? 

Dr. Ruskey: 

07:40 

Ideally, yes. We’ll talk a little bit more about this later in our session. Ideally, palliative care is coordinated alongside a person’s regular providers, be that a primary care provider or a specialist such as an oncologist (a cancer doctor) or a heart doctor. So ideally, the referral to palliative care comes from a person’s regular care provider, and then there’s close coordination of care between different services. We’ll talk a little bit more about that later. 

Cynthia Margiotta: 

08:16 

Alright, so supportive and palliative care works alongside other medical providers to help manage symptoms, emotional difficulties, spiritual challenges, and shores up the supports a person needs to help best manage their medical issues. Who qualifies for palliative care?  

Dr. Ruskey: 

08:37 

Well, first of all, a person should have a palliative need. And again, that could be in any of those areas that we mentioned earlier. It could be a physical problem, pain, nausea, not sleeping well, it   could be an emotional difficulty, or spiritual distress, but some palliative need typically related to an underlying disease process, such as cancer, lung disease, heart disease, and the like. As resources dictate, programs may focus their efforts and resources on those with the greatest need. So in other words, most programs have a limited number of providers and resources so they can’t take care of everybody who has a palliative need. And we’ll talk about the difference between generalist palliative care and what I call specialist palliative care. But certainly, in the realm of specialist palliative and supportive care, anyone who’s been in and out of the hospital several times within the past few months to the to a year, or perhaps a person who is suffering from cancer or heart condition that causes symptoms, which are difficult to manage. Those people would be ideally suited to be cared for by a palliative care service. Let’s say that somebody has a troubling symptom, but they are otherwise doing okay, they haven’t been in and out of the hospital, they don’t have an illness that’s necessarily going to advance rapidly over time. It may be that as a onetime consultation with a palliative care provider or palliative care team could help give some advice or direction to the regular providers. And then routine follow ups with a palliative care team might not be necessary. So for some people, palliative care will get involved and will follow over a long period of time with routine visits. And in other cases, it may just be a onetime consultation. 

Cynthia Margiotta: 

10:39 

What are the most common medical conditions where palliative care might help address some of these aspects of a person’s life? Who is faced with illness?  

Dr. Ruskey 

10:49 

Yeah, so we talked about a few of these, including cancer, congestive heart failure, COPD. Other conditions that come to mind would be neurologic disorders, such as folks who have suffered from a stroke, Parkinson’s disease, or ALS, which is also called Lou Gehrig’s disease. It could be a person who suffers from diabetes and the complications of diabetes, which can be lots of different things including pain, digestive problems, kidney failure, could be somebody who suffers from renal disease, kidney disease, liver disease, or blood disorders such as sickle cell disease. Virtually any condition that impacts multiple areas of a person’s life causes discomfort causes difficulties, emotionally, with you know, issues such as depression or anxiety, may disrupt normal relationships or work may cause increased need for additional services. And again, may ultimately lead to some feelings of you know, why me why now, what is the meaning of this, which are existential type concerns, any illness that that can affect all those different areas, is amenable to treatment by the specialized services provided by a palliative care service? 

Cynthia Margiotta: 

12:21 

Where would I visit with supportive and palliative care provider? In a clinic hospital home nursing facility?  

12:30 

The answer is yes. Yes. So years ago, oh say 1020 years ago, it would have been difficult to find a palliative care provider in all these different settings. But the reality is there is more and more evidence that people benefit from these services across the spectrum of where they may live. There are clinics that have palliative care providers in them. Certainly not all do. But some specialized clinics such as oncology services, sometimes will have palliative care providers. Hospitals have palliative care providers, and palliative care providers oftentimes are willing to and able to visit patients in their home, whether that’s a single family home, a nursing facility or an assisted living facility. 

13:25 

So, what specific types of treatment might a person receive in palliative care? 

13:32 

You bet. So yeah, our listeners are probably wondering, what does palliative care have to add to the type of care that I’m already receiving? So, in the first place, palliative care providers are taught and and have experience with careful listening and care planning around a client’s goals, values, and preferences, and will include family or other supports as desired by the client. Secondly, it is a team approach to care. It’s typically an interdisciplinary team, which means the different members of the team, which may include physicians, nurses, nurse practitioners, counselors and chaplains, who all make up part of an ideal palliative care service, work together, put their heads together and all their experience together to help provide the best care for any one individual. That doesn’t often happen in other systems of care. Special therapies include a skilled use of symptom management tool. These would be for issues such as pain, nausea, shortness of breath, etc. and palliative care providers are trained and have experience in utilizing lots of different medications or treatments, routes of administration that may not be commonly known or utilized in routine medical care. That can include regular medicines that a person might take by mouth, but also topical medicines, medicines that can be applied to the skin If a person’s having difficulty swallowing, or if they have a localized problem. If that’s oftentimes amenable to topical medications, it could include injections, and other interventions. Also, because there’s a focus on a whole person, people who are involved in palliative care will use techniques such as cognitive behavioral therapy to help people understand and best way to manage difficulties that they’re having using guided imagery and life review. All of these elements help to enhance these various aspects of the whole person that we mentioned before. And lastly, and most importantly, palliative care providers are taught and emphasize in any plan of care that they develop coordination of care with other health care providers. And as you and I both know, that often just doesn’t happen in the regular system of care. 

Cynthia Margiotta: 

16:17 

Unfortunately… So how often are palliative care visits? How often do they visit with a person? 

Dr. Ruskey: 

16:25 

So that is determined by an individual’s need. So visits could be multiple times a week, or they might be once a month, best practices would dictate that there’s timely follow up with particularly challenging circumstances, or after significant medication adjustments. Now that follow up might just be a phone call a day or two after prescribing a new medication to see how a person’s getting along. But it might also involve a follow up visit if there’s some complicated symptoms and a face-to-face visit is required. It depends on the program. And this would be one thing that I would encourage folks to think about if they are looking to console the palliative care service provider is to find out what the availability of that service is to have some flexibility in their visits depending on the needs of the patient. 

Cynthia Margiotta: 

17:19 

Can a person get palliative care and home health care at the same time? 

Dr. Ruskey: 

17:24 

Yes, as I mentioned before, a person can be getting what we would consider routine care that includes a regular physician office visits, being in and out of the hospital occasionally, home care services, those are all considered part of routine care, and palliative care can be provided right alongside those other providers, and oftentimes will help enhance that regular care and maybe even add to it because of the unique ability and interest in palliative care in helping to coordinate care. 

Cynthia Margiotta: 

18:03 

What are the barriers to supportive and palliative care then? 

Dr. Ruskey: 

18:07 

Yeah, good question. So probably the main barrier is that it’s oftentimes unknown to clients or families. It might be something that they’ve heard of, but oftentimes, they don’t exactly understand what it is or how it might be helpful to them. There are also misunderstandings around who is eligible and how to access the service. And that’s not just from a consumer’s perspective, even amongst healthcare professionals. Oftentimes, people don’t understand what palliative care is, and how it can best be integrated with regular care to provide the best care for patients and families. One other thing I’d like to mention is, there are multiple providers with very different programs. In other words, there are in the Colorado Springs, you know, El Paso and Teller County area, for example, somewhere around 10 to 15 different providers who provide some form of palliative care. But those services can vary from a nurse who does visits and tries to incorporate some of the elements that we described in the services that they may help with, to what I would call a full spectrum palliative care service that includes a physician, nurse practitioner, nurse, chaplain, social worker, all coordinating care around a patient’s needs. So programs can vary considerably. And that’s another difference between home health or hospice, which have pretty prescribed benefits that they’re expected to deliver to patients. Some families, palliative care can vary quite a bit. And it makes it a little challenging for folks to know which program to select. 

Cynthia Margiotta: 

20:07 

So they should ask: “are you offering these services?” If that’s what they want.  

Dr. Ruskey: 

20:15 

Absolutely. And I have some tips to, you know, help folks out as they try to navigate that with that we can talk about in a little bit. 

Cynthia Margiotta: 

20:24 

Is palliative care accepted by the medical community as a valuable part of care? 

Dr. Ruskey: 

20:31 

Yeah, you bet. So, great question. And the answer to that is yes with the caveat being that sometimes these other providers don’t exactly understand how it works. But I can give you several examples where palliative care has been definitively shown to be helpful in providing care. And that includes hospitals, integrated health care systems, oncology services, and also for the treatment of folks with COPD and congestive heart failure. Hospitals, for example, larger hospitals require that a palliative care service be available to patients and families. That’s become a regulatory benchmark for hospitals for the past three to five years. Integrated health care systems, these would be HMOs, such as Kaiser, or the Gundersen clinic is a great example in Iowa. Integrated health care systems have long recognized that when we address people’s health in a holistic manner, again, taking into consideration their values, their preferences, their goals, and crafting care around them in this multidisciplinary way, that people do better, and it costs less money, and they get the care that they want. So it’s a win win win, that integrated health care systems have recognized for a long time. Again, oncology, there’s some interesting examples of where they’ll do a study. There was one study in particular, back in 2011, folks who were suffering from lung cancer, and not only did they do better symptom wise, and so they had less pain, they felt more in control during their oncology treatment, but they actually lived a little longer. Those who received palliative care services. And again, you can imagine if you’re feeling better, you’re eating better. People are listening to you, you feel a little more empowered, you’re going to do better. So and there are similar examples for other conditions. 

Cynthia Margiotta: 

23:02 

And that’s what’s important, to do better and feel better. How does a person sign up for palliative care? 

Dr. Ruskey: 

23:10 

First of all, I would approach your regular providers for advice on whether they think palliative care would be beneficial to you, and which program they might refer you to. And if you are on the same page as your provider, then they can write a referral to palliative care services. Alternatively, you could find supportive and palliative care services online, ask friends, family, other resources, such as the Area Agency on Aging, and see if they have some suggestions, or can at least give you a list of services that you can get involved with. If you contact a palliative care service, they can also work with you to get in touch with your provider, either your primary care provider or whatever providers are most involved in helping take care of you, and coordinate and make sure that the provider also thinks it’s a good idea to get you involved. 

Cynthia Margiotta: 

24:16 

How do I select between the different supportive and palliative care providers available to me in El Paso County and Teller County? 

Dr. Ruskey: 

24:24 

Yeah, I’m glad you asked. And I’d like to put a plug in for a group that has developed a website called the palcarenetwork.com. You can get online and just punch in palcarenetwork.com and there are many resources there for patients and families related to palliative care and advanced illness in general. So they’ll find resources there for advanced care planning, description of what palliative care is and how it might benefit them. There’s a outline of some of the questions some of the things to look for in a palliative care service. Some of the things that are mentioned on the website include asking about what services are available, or their staff from multiple disciplines who would be involved in your care if you want. Our team members board certified in palliative care? Does the team regularly meet to review challenging situations? How often do they meet? Does a palliative care board certified physician or nurse practitioner routinely attend these meetings? How does the service ensure seamless coordination of care with your regular health care providers? Does the service participate in community wide efforts to enhance care through the care continuum? In other words, are they involved making sure that services generally are better coordinated in the community? In the course of your care (this is maybe most important)  is the service truly centered on you as a whole person helping guide you and empowering you in a way that makes that takes into account your values, preferences and goals? 

Cynthia Margiotta: 

26:14 

Thank you so much. Dr. Ruskey. It sounds like it’s bringing it all together with our healthcare. 

Dr. Ruskey: 

26:20 

Yeah, I think ideally it is and in in the world that we live in, where care is often disjointed and it seems like patients and families get tossed in the machine, it’s nice to know that there are services and service providers such as they may find with palliative care. 

Cynthia Margiotta: 

26:41 

And that’s all we have time for today. Thank you so much for being here. Dr. Ruskey with the Aging with Altitude podcast series. Have a great day, everybody! 

Audio 

26:55 

Before we go, I just want to give a nod to our good friends at Stargazers Theater and Event Center. That’s a warm and welcome place for concerts, screenings, and community events. Check out the schedule at stargazerstheater.com