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Hi and welcome to this edition of the Lightkeepers Podcast.

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I'm Clayton Vandiver, your lightkeeper, with the show dedicated to everyone

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who wants to get the most out of life that they can.

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We don't talk about the end of life, we talk about the quality of life.

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My co-host on this episode, Charlene, a licensed clinical social worker

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in the state of Florida, is going to be talking with us today

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about palliative care. Hospice, it isn't

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just for the end of days, it isn't just for the

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last few hours. And that's going to be very, very interesting

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to learn more about. Also, we're going to be talking about advanced

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directives on this edition

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of the Lightkeepers Podcast.

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Music

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Before we start, I'd like to invite you to please leave your questions or comments

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below. We love to hear from you, and every week we answer those questions and

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comments that appear online every Wednesday evening at 7

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p.m. Eastern. And last week we had a

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question, Charlene, from one of our listeners.

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It was on one of our RSS feeds. We're on every

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podcast feed for audio and also on YouTube for video.

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But we had someone send in a question, and it was about, what was our subject

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last week? Last week it was about

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DNR. DNR. They were asking

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what, if we would define frail, how frail

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do you have to be for DNR not to be, well, to be considered?

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So frail can have a lot of

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different definitions depending on where you are in life.

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But most of the time in the medical world when we're talking about frail,

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we're talking about someone who has a compromised immune system,

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someone who is frequently sick, a lot of hospitalizations,

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someone whose body is not strong enough

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to be able to withstand something

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that can be as violent as CPR. I understand.

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We talked a lot about the measures that happen when you don't have a DNR

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in place and the most ideal times to have them. And being frail

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is certainly one of them. I hope that helps you and your loved one. And of course, please

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send those questions and comments to us because that dialogue, that

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communication is exactly how we can help you the best. Of course,

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this is just a conversation. Go to your own personal care,

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personal medical team, financial advisors,

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whoever it is that helps you and knows your particular needs

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the best. That's who you actually need to seek counsel from.

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We just put ideas in your head to be thinking about so that you know the right questions

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to ask when the time comes. The Light Keepers podcast is an

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exclusive production of Guiding Light, Inc. We'll tell you more about a guiding

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light at the end of the show, but we don't have much time. We want to get right

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into palliative care, hospice,

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all of the things that we are talking about this week in a sort of a free

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flowing conversation. So we're not sure where this is going to take us.

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Tell us more about the difference between palliative care and hospice.

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So there is a difference, and that's something that a lot of people don't realize.

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Palliative care is when you have an

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illness that can be considered terminal, can be considered

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life limiting, but you're not ready to stop treatment yet.

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So when you have someone who is in palliative care, this is

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someone who wants to be comfortable, wants

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to focus on relieving those symptoms,

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but also wants to continue receiving treatment.

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And you know, not ready to go to hospice yet,

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and hospice is basically where you're focused on

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managing the symptoms, focusing on being comfortable,

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and you've stopped treatment. You've made that decision that you

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don't want the chemotherapy anymore, you don't want the radiation anymore,

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and you just want to basically make the best of the time that you have.

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I understand. Well, you

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receive hospice care. Most people assume, I believe,

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that you just go in for the last few days or last few hours of your life.

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That is so true. That is so true, and it's such a sad assumption,

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because there's so many people out there that could be receiving better

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care and their families could be receiving better support

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if they had known that hospice was for more than just the last few days.

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What other sort of services does hospice provide?

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Well, your basic hospice team usually includes

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a physician, someone who is signing the orders for you

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to get the medication that you need. It includes

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a nurse, someone who comes out

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to check on you and make sure that the medications that you're being prescribed

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are working. And it includes

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a CNA, an aide, someone who comes out and helps with your personal

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care needs like bathing and shampooing. There's also

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a social worker that makes sure that your family is being well supported

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and making sure that there are no gaps in resources.

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And then there's usually also a chaplain, some sort of spiritual support

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if desired by the family. Well, of course, this sort of begs the question

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how early then could someone become

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into the hospice care system so that they could

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receive? So I know a lot of folks, a lot of caregivers,

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a lot of families are concerned with where do they find a lot

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of these services that you just mentioned, and they could be provided

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for them. But how early, how soon, and when do you qualify?

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So in the United States, in order to meet the criteria

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to be eligible for hospice, you have to have a

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terminal diagnosis. This means a diagnosis that with or without

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treatment is going to cause the end of your life within six

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months or less. And that has to be certified by two different physicians.

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Well, six months is a lot longer time than most

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people that I've spoken with know that they could get into the hospice system

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and receive all of those helps, those

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assistances. Correct. Most people who come onto hospice

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services come onto hospice services within the

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last month of their life. And that's five more months

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that they could have been receiving better symptom management,

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better care, and their family could have been receiving better support.

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Well, one very interesting piece of trivia

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that I've stumbled across, a lot of folks tell me that when a family member goes into hospice,

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they actually begin to get a little bit better. They do. How does that work?

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That can happen. That can happen. And there's actually

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a lot of different reasons behind it. So let's say, for

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example, you have someone with a diagnosis of cancer, which

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cancer is a very common diagnosis that leads to hospice care.

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It's a major malady that many families share. Exactly.

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So you have someone who's been going through chemotherapy, they've been going through

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radiation, they've been in intense pain, they've been sick.

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So they've been in this situation where they've been struggling

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and they've been fighting and they're worn down. And then

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they enter hospice. There's no more chemotherapy.

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There's no more radiation. There's no more hospitalizations where

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someone's coming in every 15 minutes to poke you, to prod you, to monitor you,

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to inject you with something. You're at home.

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You're being given medication to alleviate the pain.

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And you're allowed to be comfortable and rest.

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So basically the things that were making the greatest impact on your life

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and wearing down your reserve strengths are all

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alleviated and you're just there to rest, relax, and

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be pain free as much as is possible. Correct. And a lot of

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times when people hear that, they jump to the other end of

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the spectrum in assumptions, which is that hospice kills people.

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And that's not true. That is actually fueled by

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the fact that most people enter hospice at the very end.

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They're already at the end of their life, so they come on hospice and within a few

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weeks they die. And so people think, oh, hospice killed them. Well, no, truth is

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they were just going through the natural progression of their illness.

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They were already there. Correct. They were simply taken there as

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the last measure. Normally in hospice support, the doctor,

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the hospice physician will start someone off on the smallest dose

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of medication and then they will only increase it

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as needed to control the symptoms. Medication to alleviate pain.

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Pain, shortness of breath, anxiety, which

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can be a common issue at end of life.

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All these are comforting factors. They're things that cause you to relax

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and not feel whatever else. What sort of

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pain can you feel, let's say, if you're dying of cancer?

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So cancer can cause a lot of pains depending on the type of cancer.

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You can have tumors that are growing into tissue that's causing pain.

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You can have nerve damage, which is very painful.

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Probably one of the most painful cancers is when

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it infiltrates the bone. When you have bone cancer, that can be very painful.

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So before we run out of time tonight, let's go back and talk about those advanced directives

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that we mentioned at the top of the show. What are those? How do they play into all this?

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So advanced directives are documents that people draft

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to outline what type of medical treatment they would want

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should they become seriously ill and in a situation

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where they can no longer make their own medical decisions. It's kind of like

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speaking for yourself before you're in the situation where you need to speak for yourself.

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Ah, because once they're in the care,

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oftentimes their ability to communicate may be diminished, may be eliminated.

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Correct. So you need some form of document or legal form.

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Well, how legal are these forms, these advanced directives?

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So advanced directives come in a lot of variations.

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There's a lot of different documents that are circulating out there, and of course they're the basic

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kind that you can download off the internet. As long as it is signed

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and witnessed and notarized, it can be considered legally binding.

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There is a document called the Five Wishes,

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which is legally binding in 48 states, and

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that one is probably the most common, and it's a very simplified

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document which basically just covers three scenarios

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would you or would you not want life support in those situations.

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And advanced directives like that, including advanced directives

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drafted by attorneys, oftentimes will focus

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purely on end of life situations, do you or do you not want life support.

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And these documents can, they're great to have,

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but they can be a little lacking for one simple reason.

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What's that? They don't talk about when

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you would want those items to become active.

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So most people think, not until I can no longer make

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my own decisions, okay, so you do not want life support

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if you have no quality of life. Who defines

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quality of life?

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Everyone has their own quality of life definition internally, but it's communicating

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that to others that we run into the challenge. Quality of life is

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very subjective, and that's why I always recommend anyone who has advanced directives

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it's wonderful to state, no I do not want care,

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yes I do want care, but it's also important to identify that

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unless, yes I want life support, unless there's

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no hope of recovery. No I don't want life support,

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unless there's a chance that I can recover back

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to this level of quality of life. What does quality

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of life look like? That's an important item to define.

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So before making these sorts of documents or these sorts of decisions, that's

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one of the things that I guess our listeners and our viewers

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really need to think about a little bit and work on defining

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for themselves. This might be something that families and caregivers can be

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involved with. That's an open conversation. It's not necessarily

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a comfortable conversation. No, a lot of people don't want to talk

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about it, and it is an important conversation to have though

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because advanced directives are great to have in place, but

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you have to know that

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your loved ones are going to follow those advanced directives

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when you can no longer speak for yourself. Of course, of course.

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Well, we know now a little bit more about advanced directives, about

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hospice, that it's not just for those last few days. It has

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resources that can help as far out as six months. Is that

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true in every state? So yes, that is across

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the United States. Six months or less is the standard.

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Now, there is another part of that. I don't want people to think that

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just because they're in hospice, it means that they are

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going to die within six months. I actually had a patient

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when I was working at an inpatient unit for hospice,

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I had a patient ask me when he was going to die,

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and I gave him a brief

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look over, and I checked the bottom of his feet, and I said, no,

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it's not here, and he said, what's not there? I said, an expiration date.

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We don't know. We don't know when our time is up.

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Of course. And I have seen people that were on hospice

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for over a year, over a year, they were

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receiving hospice support because their health continued to decline,

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but it declined slowly. And for a year,

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they were able to get the benefit of hospice support for them and their

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families. And everyone's situation is a little bit different. It's different. That's why

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we say that this is, it's all a highly personal

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choice, no conversation that we have on the Light Keepers podcast

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should ever take the place of your own medical care,

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your own medical care team, your personal advisor, who should

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always be consulted by you on your specific individual

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needs. Correct. But people should not be afraid

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to advocate for themselves if it's something they feel particularly

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strongly about. And I can give you a wonderful example

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of this, a personal example. Okay. My

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father had lung cancer, and he had already had

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part of one lung removed, and they found cancer in the other

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lung. And he didn't want any more surgeries, and he didn't

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want to do the cancer treatment. He wanted hospice so he could be

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comfortable and actually have a decent quality of life for his

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remaining time. And his physician refused to sign the

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order. It does require a medical order to get into hospice, to start hospice

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care. His physician refused it, would not

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sign the order for him to receive hospice care unless he was willing

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to go through chemotherapy first to give it a try.

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And we had to fight that. And we did

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end up having to go to the surgeon who had done

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the lung removal, the lobectomy, to

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get that order signed so that he could receive hospice support.

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A lot of doctors are so focused on saving

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lives and preserving life that they're not willing to give up.

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And they do so with the best of intentions. They

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really do mean well. They want to keep their patient alive.

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But that may not be what the patient wants. Right.

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And of course, from a social work perspective, that's exactly what you do.

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You advocate for that patient's rights and

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give them their options so that they can make the best decision for themselves.

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And that's what we try to do right here on the Lightkeepers

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Podcast. Of course, it's always good to talk about the quality of life and

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events because every single one of us is likely to

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go through some of these events at some point in our lives

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either not prepared at all or very well prepared

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indeed. From watching us and joining us here on the Lightkeepers

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Podcast each and every Wednesday evening at 7 p.m.

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Eastern. We hope you found some information

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that was helpful on this edition of the Lightkeepers Podcast. Please leave

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your questions and comments below. We love to hear from you each week.

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The Lightkeepers Podcast is an exclusive production of Animation

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Studios and is brought to you by A Guiding Light, a 501-C3

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nonprofit organization dedicated to education and

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information that allows informed preparation for living the very best

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life possible. The mission of A Guiding Light is to provide

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education about life planning, guidance, and counseling

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that eases an individual's transition and guides them and their family

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regardless of their ability to pay through options that improve

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the quality of their remaining days. The organization is committed

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to training professionals who will help you find the best information

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and options to meet your planning needs that are available in your

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area so you can be aware of your choices, confident in your

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decisions, and at peace that you have made the

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very best decisions to live life your way.

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For more information on A Guiding Light, please visit the website at

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aguidinglight.org. Or to make a tax-deductible contribution,

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please visit the donation page on the website

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where you'll find tax information and the address to send a check,

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which is also on the screen right below me.

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We still have so much more great information to bring you in the coming weeks.

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We hope you'll join us. And your questions and comments, we always love to hear

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from you. Speaking of that, hit the like and subscribe button right now

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while you're thinking about it. Turn on that notify bell so you'll catch every

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single episode. I'm Clayton Vandiver, the Lightkeeper.

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We'll see you then.

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