Ask Heather: Aging Matters

Welcome to Ask Heather: Aging Matters, our ongoing series where Aging Life Care Expert Heather Suri, Founder and CEO of Pathways in Aging, breaks down the real-world challenges families face while navigating elder care, hospitalizations, home-care decisions, and long-term planning.

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What is the difference between hospice and palliative care?

Okay. So let’s talk about hospice and palliative care and what’s similar and what’s different. First, I want to say that palliative care is an approach to care. It’s an approach where we put the individual’s comfort and quality of life in the center focus of every decision that is made. If you think about palliative care as an umbrella, hospice is a service that comes under palliative care. Now that can get confusing because a lot of people know about people who receive palliative care services that Medicare covers and that involves someone coming to your home.

So if we talk about hospice as a service and palliative care as a service they are both covered by Medicare. Folks who are electing hospice services generally need to have a life-limiting illness with a prognosis of six months or less. So that’s something that the physician certifies. And when someone is under hospice care, we’re no longer pursuing curative or rehabilitative treatment. Our sole focus under hospice care is comfort.

Through the Medicare hospice benefit, we get nurses coming to visit. We might get a home health aide coming to visit, a chaplain, a social worker. There’s a whole interdisciplinary team that provides intermittent visits. And this is a critical piece of information that a lot of families miss, is that these visits are intermittent. Hospice does not provide care that comes to the bedside to help care for someone for 4, 6, 12, 24 hours. That is still a service that is performed by a home care agency. So for people who need that kind of care going onto hospice, you hang on to your excellent home care company and hospice is an additional service that comes on top.

Now, for people who maybe aren’t quite ready for hospice, they don’t meet that eligibility criteria, they’re not in the last six months of life, or maybe they still want to benefit from rehabilitative services like rehabilitative physical therapy or occupational therapy or they might still be pursuing some treatments for their illness but have symptoms of discomfort that are disruptive to their lives, palliative care can be a great solution for that. A palliative care provider might be a doctor, might be a nurse practitioner would typically come visit about once a month to address the symptoms and give some ideas that might include prescriptions to help manage symptoms of discomfort, (could be pain, could be shortness of breath, could even in some cases be agitation or anxiety). So, they can be a great supplemental service. Does not replace your primary care provider, certainly doesn’t replace your home care company, but can provide some additional support around symptoms of discomfort.

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It Takes a Team: Community Support for People living with dementia & Parkinson’s

Heather also highlights the importance of advocacy, planning for the future, and leveraging local resources that support not only individuals, but the families walking alongside them. Below, is the full transcript from the above video discussion.

So in talking about complicated diagnoses like dementia or Parkinson’s,… Pathways in Aging, we have a huge passion for the neurodegenerative diseases and we do a lot of continuing education and a lot of connection with community resources of support for folks living with these diagn—diagnosis. And I want to emphasize not people who are suffering from these diseases or struggling with these diseases but living with these diseases because they’re living, they’re here, their families are here. And I think that sometimes in the medical system we can get really caught up in what we can and can’t fix and not how to to really continue to thrive and and access the supports in the community that help us thrive with these diagnoses.

So, yes, we can help you find the best neurologist in the area. We are up to date on current treatments. We can help you navigate that treatment side very nimbly. That’s an area of expertise for us. But I’m also interested in, you know, opportunities for social support. In Northern Virginia, we have an Insight Memory Care Center. We have other county-based day centers. We have the Inova Parkinson’s and Movement Disorder Center that runs over a hundred free programs a month in person and virtually that help people thrive. We’re talking about exercise, education, and support.

Working with a home care company or working with a companion company can help people access parts of their life that have maybe felt more limited with the impact of their diagnosis. But we’re very interested at Pathways in helping people live well and are well networked in the community with a variety of ways to do that.

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What should you do if a loved one is hospitalized?

So when someone is hospitalized, and you may have heard this before, I certainly did not coin the term, but it is more relevant today than it ever been. Discharge planning starts on the day of admission. You will be surprised how quickly that hospitalization goes. And you might not be feeling like your person is well enough to leave the hospital, but the hospital utilization review department sees this a different way. So the things you’re going to want to be thinking about is can someone go directly home?

Is home set up for mobility? Can someone get around? What kind of care are they going to need? Or if you’ve been in the hospital a few days, do we need to consider a skilled nursing facility to do some rehab to get ready to go home or is home not going to be an option because of what’s going on or maybe not an immediate option. So, there’s a lot of different paths to take.

I’m a big believer in front-loading home care for a hospital discharge. You can always pull back, but if you go home and you don’t have enough support in place and someone has a fall or, you know, we get a spouse caregiver or a family caregiver ending up with their own medical crisis because of the overwhelm and the stress and the lack of rest. So, it’s always better to put in a little more home care than you think you’re going to need and then re-evaluate after a few days to see how things are going.

The landscape of skilled nursing facilities, particularly for people who have diagnoses of cognitive impairment, are really difficult. Going to a skilled nursing facility for rehab, sometimes that’s necessary. Sometimes that rehab is going to help people get back to their baseline, but when you can, if it’s possible, I always recommend you layer in home care for that rehab stay. They [Rehab staff] work really hard and they [Rehab facilities] are chronically understaffed at skilled nursing facilities.

They do the best they can, but it is not unusual to have really long waits for answers to call lights, to get to the bathroom, to have someone flag down a nurse if you need pain medicine. And so having home care there at bedside can help people get the most out of their rehab experience.

Why Safe and Secure Transition Home Care?

So, Safe and Secure Transitions is one of the home care companies that we refer to most often because of the quality of the work. You know, it’s the level of communication that we get from the caregivers is something that families and care managers value greatly. If we don’t know what’s happening, it’s hard for us to make impactful recommendations. And so when you have a home care team that is the boots on the ground, the eyes and the ears that can keep that communication flowing back and forth, it actually saves families money from a care management standpoint because we’re not chasing the information or trying things that aren’t going to work because we’ve got this really detailed high quality information and communication coming.

And I think that they hire very selectively. The caliber of the caregivers that we see working with Safe and Secure is impressive. And as I mentioned previously that oversight piece is there. You know, I think the caregivers in my experience feel very supported. They know that the office has their back. They know that the office believes in them. They know the office is respectful of their professional talents and treats them like the professionals they are. And so all of that together makes for a really elevated experience that is certainly different than the run-of-the-mill.