Hi and welcome to this edition of the Lightkeepers Podcast.
I'm Clayton Vandiver, your lightkeeper, with the show dedicated to everyone
who wants to get the most out of life that they can.
We don't talk about the end of life, we talk about the quality of life.
My co-host on this episode, Charlene, a licensed clinical social worker
in the state of Florida, is going to be talking with us today
about palliative care. Hospice, it isn't
just for the end of days, it isn't just for the
last few hours. And that's going to be very, very interesting
to learn more about. Also, we're going to be talking about advanced
directives on this edition
of the Lightkeepers Podcast.
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Before we start, I'd like to invite you to please leave your questions or comments
below. We love to hear from you, and every week we answer those questions and
comments that appear online every Wednesday evening at 7
p.m. Eastern. And last week we had a
question, Charlene, from one of our listeners.
It was on one of our RSS feeds. We're on every
podcast feed for audio and also on YouTube for video.
But we had someone send in a question, and it was about, what was our subject
last week? Last week it was about
DNR. DNR. They were asking
what, if we would define frail, how frail
do you have to be for DNR not to be, well, to be considered?
So frail can have a lot of
different definitions depending on where you are in life.
But most of the time in the medical world when we're talking about frail,
we're talking about someone who has a compromised immune system,
someone who is frequently sick, a lot of hospitalizations,
someone whose body is not strong enough
to be able to withstand something
that can be as violent as CPR. I understand.
We talked a lot about the measures that happen when you don't have a DNR
in place and the most ideal times to have them. And being frail
is certainly one of them. I hope that helps you and your loved one. And of course, please
send those questions and comments to us because that dialogue, that
communication is exactly how we can help you the best. Of course,
this is just a conversation. Go to your own personal care,
personal medical team, financial advisors,
whoever it is that helps you and knows your particular needs
the best. That's who you actually need to seek counsel from.
We just put ideas in your head to be thinking about so that you know the right questions
to ask when the time comes. The Light Keepers podcast is an
exclusive production of Guiding Light, Inc. We'll tell you more about a guiding
light at the end of the show, but we don't have much time. We want to get right
into palliative care, hospice,
all of the things that we are talking about this week in a sort of a free
flowing conversation. So we're not sure where this is going to take us.
Tell us more about the difference between palliative care and hospice.
So there is a difference, and that's something that a lot of people don't realize.
Palliative care is when you have an
illness that can be considered terminal, can be considered
life limiting, but you're not ready to stop treatment yet.
So when you have someone who is in palliative care, this is
someone who wants to be comfortable, wants
to focus on relieving those symptoms,
but also wants to continue receiving treatment.
And you know, not ready to go to hospice yet,
and hospice is basically where you're focused on
managing the symptoms, focusing on being comfortable,
and you've stopped treatment. You've made that decision that you
don't want the chemotherapy anymore, you don't want the radiation anymore,
and you just want to basically make the best of the time that you have.
I understand. Well, you
receive hospice care. Most people assume, I believe,
that you just go in for the last few days or last few hours of your life.
That is so true. That is so true, and it's such a sad assumption,
because there's so many people out there that could be receiving better
care and their families could be receiving better support
if they had known that hospice was for more than just the last few days.
What other sort of services does hospice provide?
Well, your basic hospice team usually includes
a physician, someone who is signing the orders for you
to get the medication that you need. It includes
a nurse, someone who comes out
to check on you and make sure that the medications that you're being prescribed
are working. And it includes
a CNA, an aide, someone who comes out and helps with your personal
care needs like bathing and shampooing. There's also
a social worker that makes sure that your family is being well supported
and making sure that there are no gaps in resources.
And then there's usually also a chaplain, some sort of spiritual support
if desired by the family. Well, of course, this sort of begs the question
how early then could someone become
into the hospice care system so that they could
receive? So I know a lot of folks, a lot of caregivers,
a lot of families are concerned with where do they find a lot
of these services that you just mentioned, and they could be provided
for them. But how early, how soon, and when do you qualify?
So in the United States, in order to meet the criteria
to be eligible for hospice, you have to have a
terminal diagnosis. This means a diagnosis that with or without
treatment is going to cause the end of your life within six
months or less. And that has to be certified by two different physicians.
Well, six months is a lot longer time than most
people that I've spoken with know that they could get into the hospice system
and receive all of those helps, those
assistances. Correct. Most people who come onto hospice
services come onto hospice services within the
last month of their life. And that's five more months
that they could have been receiving better symptom management,
better care, and their family could have been receiving better support.
Well, one very interesting piece of trivia
that I've stumbled across, a lot of folks tell me that when a family member goes into hospice,
they actually begin to get a little bit better. They do. How does that work?
That can happen. That can happen. And there's actually
a lot of different reasons behind it. So let's say, for
example, you have someone with a diagnosis of cancer, which
cancer is a very common diagnosis that leads to hospice care.
It's a major malady that many families share. Exactly.
So you have someone who's been going through chemotherapy, they've been going through
radiation, they've been in intense pain, they've been sick.
So they've been in this situation where they've been struggling
and they've been fighting and they're worn down. And then
they enter hospice. There's no more chemotherapy.
There's no more radiation. There's no more hospitalizations where
someone's coming in every 15 minutes to poke you, to prod you, to monitor you,
to inject you with something. You're at home.
You're being given medication to alleviate the pain.
And you're allowed to be comfortable and rest.
So basically the things that were making the greatest impact on your life
and wearing down your reserve strengths are all
alleviated and you're just there to rest, relax, and
be pain free as much as is possible. Correct. And a lot of
times when people hear that, they jump to the other end of
the spectrum in assumptions, which is that hospice kills people.
And that's not true. That is actually fueled by
the fact that most people enter hospice at the very end.
They're already at the end of their life, so they come on hospice and within a few
weeks they die. And so people think, oh, hospice killed them. Well, no, truth is
they were just going through the natural progression of their illness.
They were already there. Correct. They were simply taken there as
the last measure. Normally in hospice support, the doctor,
the hospice physician will start someone off on the smallest dose
of medication and then they will only increase it
as needed to control the symptoms. Medication to alleviate pain.
Pain, shortness of breath, anxiety, which
can be a common issue at end of life.
All these are comforting factors. They're things that cause you to relax
and not feel whatever else. What sort of
pain can you feel, let's say, if you're dying of cancer?
So cancer can cause a lot of pains depending on the type of cancer.
You can have tumors that are growing into tissue that's causing pain.
You can have nerve damage, which is very painful.
Probably one of the most painful cancers is when
it infiltrates the bone. When you have bone cancer, that can be very painful.
So before we run out of time tonight, let's go back and talk about those advanced directives
that we mentioned at the top of the show. What are those? How do they play into all this?
So advanced directives are documents that people draft
to outline what type of medical treatment they would want
should they become seriously ill and in a situation
where they can no longer make their own medical decisions. It's kind of like
speaking for yourself before you're in the situation where you need to speak for yourself.
Ah, because once they're in the care,
oftentimes their ability to communicate may be diminished, may be eliminated.
Correct. So you need some form of document or legal form.
Well, how legal are these forms, these advanced directives?
So advanced directives come in a lot of variations.
There's a lot of different documents that are circulating out there, and of course they're the basic
kind that you can download off the internet. As long as it is signed
and witnessed and notarized, it can be considered legally binding.
There is a document called the Five Wishes,
which is legally binding in 48 states, and
that one is probably the most common, and it's a very simplified
document which basically just covers three scenarios
would you or would you not want life support in those situations.
And advanced directives like that, including advanced directives
drafted by attorneys, oftentimes will focus
purely on end of life situations, do you or do you not want life support.
And these documents can, they're great to have,
but they can be a little lacking for one simple reason.
What's that? They don't talk about when
you would want those items to become active.
So most people think, not until I can no longer make
my own decisions, okay, so you do not want life support
if you have no quality of life. Who defines
quality of life?
Everyone has their own quality of life definition internally, but it's communicating
that to others that we run into the challenge. Quality of life is
very subjective, and that's why I always recommend anyone who has advanced directives
it's wonderful to state, no I do not want care,
yes I do want care, but it's also important to identify that
unless, yes I want life support, unless there's
no hope of recovery. No I don't want life support,
unless there's a chance that I can recover back
to this level of quality of life. What does quality
of life look like? That's an important item to define.
So before making these sorts of documents or these sorts of decisions, that's
one of the things that I guess our listeners and our viewers
really need to think about a little bit and work on defining
for themselves. This might be something that families and caregivers can be
involved with. That's an open conversation. It's not necessarily
a comfortable conversation. No, a lot of people don't want to talk
about it, and it is an important conversation to have though
because advanced directives are great to have in place, but
you have to know that
your loved ones are going to follow those advanced directives
when you can no longer speak for yourself. Of course, of course.
Well, we know now a little bit more about advanced directives, about
hospice, that it's not just for those last few days. It has
resources that can help as far out as six months. Is that
true in every state? So yes, that is across
the United States. Six months or less is the standard.
Now, there is another part of that. I don't want people to think that
just because they're in hospice, it means that they are
going to die within six months. I actually had a patient
when I was working at an inpatient unit for hospice,
I had a patient ask me when he was going to die,
and I gave him a brief
look over, and I checked the bottom of his feet, and I said, no,
it's not here, and he said, what's not there? I said, an expiration date.
We don't know. We don't know when our time is up.
Of course. And I have seen people that were on hospice
for over a year, over a year, they were
receiving hospice support because their health continued to decline,
but it declined slowly. And for a year,
they were able to get the benefit of hospice support for them and their
families. And everyone's situation is a little bit different. It's different. That's why
we say that this is, it's all a highly personal
choice, no conversation that we have on the Light Keepers podcast
should ever take the place of your own medical care,
your own medical care team, your personal advisor, who should
always be consulted by you on your specific individual
needs. Correct. But people should not be afraid
to advocate for themselves if it's something they feel particularly
strongly about. And I can give you a wonderful example
of this, a personal example. Okay. My
father had lung cancer, and he had already had
part of one lung removed, and they found cancer in the other
lung. And he didn't want any more surgeries, and he didn't
want to do the cancer treatment. He wanted hospice so he could be
comfortable and actually have a decent quality of life for his
remaining time. And his physician refused to sign the
order. It does require a medical order to get into hospice, to start hospice
care. His physician refused it, would not
sign the order for him to receive hospice care unless he was willing
to go through chemotherapy first to give it a try.
And we had to fight that. And we did
end up having to go to the surgeon who had done
the lung removal, the lobectomy, to
get that order signed so that he could receive hospice support.
A lot of doctors are so focused on saving
lives and preserving life that they're not willing to give up.
And they do so with the best of intentions. They
really do mean well. They want to keep their patient alive.
But that may not be what the patient wants. Right.
And of course, from a social work perspective, that's exactly what you do.
You advocate for that patient's rights and
give them their options so that they can make the best decision for themselves.
And that's what we try to do right here on the Lightkeepers
Podcast. Of course, it's always good to talk about the quality of life and
events because every single one of us is likely to
go through some of these events at some point in our lives
either not prepared at all or very well prepared
indeed. From watching us and joining us here on the Lightkeepers
Podcast each and every Wednesday evening at 7 p.m.
Eastern. We hope you found some information
that was helpful on this edition of the Lightkeepers Podcast. Please leave
your questions and comments below. We love to hear from you each week.
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We still have so much more great information to bring you in the coming weeks.
We hope you'll join us. And your questions and comments, we always love to hear
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single episode. I'm Clayton Vandiver, the Lightkeeper.
We'll see you then.
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