ATW-S1E20-When we should consider hospice?
Laura Banner

Laura Banner

Family Nurse Practitioner, Dementia Trainer & Advocate,
Keynote Speaker (Available for speaking engagements on Dementia)

When we should consider hospice

You ever wondered when is the right time to ask for a hospice consult? 

Well, it’s something that I find in the world of dementia, to be something that is often not talked about as often as it should be. Let me first start by saying there’s a big difference between inpatient hospice, where someone is either at the hospital or in a facility, versus in-home hospice. I almost wish they had two different names because just the term hospice tends to create some anxiety in people unless they have some prior experience with it. So, for the sake of this episode, I’m talking about In-Home hospice, where someone remains at home, and hospice comes to them.

So, what does it really mean to have hospice come in and join the care team?
Well let’s first talk about what hospice is, or maybe I should say what it is not.

Hospice does not accelerate the end of someone’s life, they don’t give medicine to cause someone to die, they don’t speed up the process if you will. Hospice is a way of approaching, end of life so that it allows the person to spend their last days, weeks, months, sometimes years with comfort in a sense of dignity. Hospice is based on the concept of treating the entire family, not just the person with the terminal diagnosis.

This week was rather difficult in my clinic practice because I needed to offer hospice care or hospice consult to two families, both of which it was the first time that I had ever met them. And I’m always a bit uncomfortable bringing up hospice when we really don’t have a rapport, especially if I don’t know what their reference point is for hospice, they’ve never been part of hospice before or if they have that valid that hospice just means everyone’s throwing their hands up giving up and assuming someone is going to pass in the relatively near future.

But on these two separate occasions, what became quite evident to me during the course of our visit is that the needs of the patient far exceeded the family’s ability, not because the family wasn’t capable, it was because the disease, Alzheimer’s and on the other occasion, it was another type of dementia, was so advanced, that it would be almost impossible to imagine that a family could manage these end stages, without some assistance. So, in the US. Hospice is a right that we all have that by the sheer nature of a terminal diagnosis, we become qualified for hospice care. Now, it’s very different when someone’s diagnosis is cancer or heart disease or some other type of progressively debilitating diagnosis other than dementia.

In order for someone to qualify for hospice, with a diagnosis of Alzheimer’s or some other type of dementia, there needs to be a reasonable expectation that that person may pass within the next six months or less. Again, it’s an expectation, based on the rate of progression, but it’s not an absolute. So, how is that determined?
Well, oftentimes, however, their progression has been over the past six months is a good indicator of how we’ll be over the next six months.
But what happens if someone signs on for hospice in six months comes in the person is doing okay? They’re not discharged, we know that dementia is progressive in irreversible, they would just go ahead and recertify that person and continue on with hospice. So, there are other times when someone with dementia may qualify for hospice, even if the expectancy of life exceeds six months. And that would be if they have another diagnosis, such as COPD, or congestive heart failure or maybe cancer or some other type of progressively debilitating potentially terminal disease. When they have that, and also have a type of dementia, they may qualify earlier. They also may qualify if they start having frequent ER visits, or maybe if they’re experiencing some weight loss or dehydration because they’re having difficulty swallowing and chewing, they can also qualify if their speech is limited. Now, officially what I’ve heard is that they have to be able to only speak six words or less in the day, they might repeat those words like yes or no, and they wouldn’t count it each time it’s spoken. But again, six words. These words need to be what we call intelligent words, it can’t be a string of words put together that mean nothing that would be nonsensical speech, and that would not account for six words. But what I’ve seen is a lot of flexibility with this particular criteria, maybe they’re having incontinence of bladder or bowel. That factors in, and may actually make them qualify for hospice.

They can also qualify if they’re unable to walk independently. If they’re in an advanced stage of dementia, and maybe they require a walker or a wheelchair, or maybe they’re not able to sit up independently without slumping over that would again make them qualify for hospice. They can also qualify for hospice if they can no longer smile, this is certainly not something that someone would qualify, in the early stages and not even for the most part, in the moderate stage, but certainly in the late stages of dementia, And if you have these other variables such as heart failure, uncontrolled diabetes, cancer, the person might qualify sooner than they would otherwise.

So, why would you want to bring on hospice?
Well, here are a few reasons. First of all, as I mentioned, the goal of hospice is to provide dignity and comfort for your loved one, above all else. Once someone has been accepted into hospice, their resources are limitless. If they need a hospital bed, it’s provided, if they need a wheelchair, it’s delivered to their home, they have regular nurse visits, they have a social worker who becomes involved, if they need pastoral care for some faith-based counseling, that’s provided all their medications are covered. If they need transport to their different provider visits to their doctor’s office, most hospices provide that as well. I’ve even seen some hospice services, and they are not all alike. But I’ve seen some offer massage therapy or music therapy. They also offer respite care, so if you are the caregiver, and you just need some time to regroup recharge, but you’re not able to do that as you’re caring for your loved 24/7, hospice provides for that.

Hospice takes the entire family and wraps their arms around the family unit and understands that your loved one is not going through this alone. The impact is felt throughout the family, and so counseling services are offered, social workers available. And after your loved one passes, grief counseling is available.

There’s just so much that hospice can provide to a family who is going through a progressive terminal diagnosis. Again, the myth that it accelerates death is untrue, Now what it does to, is it does stop aggressively treating terminal conditions, comfort care Yes, aggressive therapy No. So, if your loved one has cancer, along with their dementia You’re no longer going to be going for chemo treatment or radiation. Unless it’s to provide comfort, perhaps to reduce a tumor, maybe it’s pressing on a vital organ or some structure within the body that’s causing pain, and for that reason, they call us palliative radiation would typically be covered.

What I like to do is when I feel that an individual would qualify for hospice, I make the referral, of course, with the family’s permission. I tell the family, Ask a lot of questions, and even if your loved one is accepted into hospice care, you can opt to decline it; maybe you’re just not ready.

And yes, it’s true. If your loved one is on hospice, and all of a sudden, they develop pneumonia or urinary tract infection, and you feel that you need to have that treated, which in the setting of hospice it typically is not. You can sign your loved one off hospice, and in the future, you are able to sign on again.

Again, each hospice is a little bit different. So it will be very important to ask a lot of questions. But understand that once hospice is on board you have a team that is readily accessible to you, they understand what the road ahead looks like, and they are going to do everything in their power to make it as smooth as possible for not only your loved one but also for you, so if you’re not sure if your loved one qualifies for hospice, it does not make you look bad to ask your provider What do you think.

So often, when I bring it up, I see a sense of relief in the faces of the loved ones, the family members, the caregivers, I think they’re just really uncomfortable or embarrassed or maybe even ashamed to bring it up. I don’t know maybe they feel like it’s an admission of failure, which absolutely is not.

If you’re wondering if you think perhaps, your loved one may qualify. Ask for the consult, have a representative come out to your home, meet your loved one, get some history. They’ll tell you whether or not your loved one qualifies. And if they don’t, that’s okay, because we’re going to find out why they didn’t meet criteria. So that in the future, once your loved one does hit those milestones and meets the criteria, we can call hospice back, it’s a wonderful service, and not everybody meets criteria, and there’s a reason that it’s so stringent, it’s because of all the value that they offer, so it needs to be reserved for the appropriate patients.

Anyway, I hope this helps. If you have any questions, please feel free to go ahead and ask your provider. Thanks for listening.

I hope you decide to subscribe to my podcast I release new episodes every Tuesday.
Go ahead and check out my website as well. You can find me at compassionate or on Instagram at compassionate_education.
Thanks again for listening, and have a great week!

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