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@irvkay312

Posts: 172
Joined: Jan 26, 2012

Palliative Care and Hospice Care

Posted by @irvkay312, Jul 8, 2016

Having come to face something that is not understood as fully as it should be, I am suggesting that Palliative Care and Hospice Care be inserted into a group at Mayo Connect. Such could benefit all who face such situations with whatever condition they may have.

irvkay312

REPLY

@irvkay312 and @colleenyoung What a wonderful idea! Palliative and Hospice care are something that many of us will be part of and it would make a very helpful discussion thread. As we share our other health concerns it is a good idea to address this one as well.

@hopeful33250

@irvkay312 and @colleenyoung What a wonderful idea! Palliative and Hospice care are something that many of us will be part of and it would make a very helpful discussion thread. As we share our other health concerns it is a good idea to address this one as well.

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Having seen this element that we can all come to face from different health conditions, I feel that learning and understanding of it will help us face the realities it can or be able to bring to our individual lives when the time comes. Understanding is learning and learning helps to resolve problems before they reach levels that can harm us emotionally.

irvkay312

@hopeful33250

@irvkay312 and @colleenyoung What a wonderful idea! Palliative and Hospice care are something that many of us will be part of and it would make a very helpful discussion thread. As we share our other health concerns it is a good idea to address this one as well.

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@irvkay312 Well said!

I sent an email to Colleen before I took her advice to begin this under discussions of Let’s Talk. Personally and with the area’s that this can cover and help bring understanding too; I’d like to see a separate area related to it–because these things can face us at unknown times, as well as teach us ways to help face them.

irvkay312

A topic so dear to my heart!!!!

@dawn_giacabazi

A topic so dear to my heart!!!!

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As I suggested to Colleen, I think a topic area of Palliative Care and Hospice Care would be helpful to many. That way people have a topic of concern they can relate too, rather than speaking about a mixed number of problems people need to speak on.

irvkay312

Let’s get the conversation started.

There is often a lot of confusion about the difference between palliative care and hospice care. Here is a succinct description from https://getpalliativecare.org

What is the difference between hospice and palliative care?
– Palliative care is for anyone with a serious illness. You can have it at any age and any stage of an illness, and you can have it along with curative treatment. It is not dependent on prognosis.

– Hospice is an important Medicare benefit that provides palliative care for terminally ill patients who may have only months to live. People who receive hospice are also no longer receiving curative treatment for their underlying disease.

On this page, you’ll find answers to Frequently Asked Questions about palliative and hospice care https://getpalliativecare.org/whatis/faq/#what-is-the-difference-between-hospice-and-palliative-care such as:
1. How do I know if palliative care is right for me?
2. What does palliative care do?
3. What can I expect?
4. Will my insurance cover palliative care?
5. Do I have to give up my own doctor?
6. Can I have curative treatment together with palliative care?
7. Who else, besides the patient, can benefit?
8. Where do I get palliative care?
9. Who provides palliative care?
10. Can I get palliative care if I am at home?
11. What is the difference between hospice and palliative care?
12. How do I get palliative care?

But these definitions don’t tell the whole story. It’s also important to hear the personal stories and experience. @irvkay312 @dawn_giacabazi @hopeful33250 what does palliative care mean to you?

@colleenyoung At the end of life, each story is different. Death comes suddenly, or a person lingers, gradually failing. For some people, the body weakens while the mind stays alert. Others remain physically strong, and cognitive losses take a huge toll. But for everyone, death is inevitable, and each loss is personally felt by those close to the one who has died.

It’s quality over quantity.
Hospice (medical) and palliative care (emotional & spiritual) allow the family members to be family members. When my mother was dying from stage 4 GBM, I begged for help. I was so busy being the caregiver, the nurse, and the provider that I had no time to grieve and enjoy what little time was left being her daughter.

@colleenyoung @irvkay312 @dawn_giacabazi Ok, I’m learning something. I had mistakenly thought that hospice care and palliative care were one of the same, but not so. Thanks for beginning the conversation @irvkay312 and thanks for all of the information Colleen and thanks for sharing personal experience Dawn. Teresa

@colleenyoung

Let’s get the conversation started.

There is often a lot of confusion about the difference between palliative care and hospice care. Here is a succinct description from https://getpalliativecare.org

What is the difference between hospice and palliative care?
– Palliative care is for anyone with a serious illness. You can have it at any age and any stage of an illness, and you can have it along with curative treatment. It is not dependent on prognosis.

– Hospice is an important Medicare benefit that provides palliative care for terminally ill patients who may have only months to live. People who receive hospice are also no longer receiving curative treatment for their underlying disease.

On this page, you’ll find answers to Frequently Asked Questions about palliative and hospice care https://getpalliativecare.org/whatis/faq/#what-is-the-difference-between-hospice-and-palliative-care such as:
1. How do I know if palliative care is right for me?
2. What does palliative care do?
3. What can I expect?
4. Will my insurance cover palliative care?
5. Do I have to give up my own doctor?
6. Can I have curative treatment together with palliative care?
7. Who else, besides the patient, can benefit?
8. Where do I get palliative care?
9. Who provides palliative care?
10. Can I get palliative care if I am at home?
11. What is the difference between hospice and palliative care?
12. How do I get palliative care?

But these definitions don’t tell the whole story. It’s also important to hear the personal stories and experience. @irvkay312 @dawn_giacabazi @hopeful33250 what does palliative care mean to you?

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I think that this is an excellent place to start, in that we never know what the next day can hold, nor do we understand instances until they face us. In essence, I was personally put in Palliative Care by my Oncologist 3 months ago. I signed a POLST form noting what I did and didn’t want in the form of anymore treatment. Since I’d had 28 radiation treatments, 2 cycles intravenious chemotherapy and 15 cycles Targeted chemotherapy. Some of those chemo elements brought more hardship on, or lessened the operation of other body system organs. When the next step came, a loss of weight, waist size, appetite and easier tiredness, “it was noted since I couldn’t take any more treatments in conjunction with my epilepsy and migraine headaches that I would be put into Hospice–since Hospice treats my condition of pain while helping me do what I can each day. The other significant factor was a mestasation growth to my liver and two uptake area’s (which indicated that the cancer was in my blood. Next came the realization that uptake (ripeness for cancerous growth) had reached my spleen, GI and GU tracts. That is why it’s important to learn and know what the next step is, so as to lessen anxiety, worry and speculation.

Those were my instances which are changing daily, but only being treated to avoid pain (primarily bone pain), until the time I may pass away. Fortunately, I also have no fear or anxiety at this stage of my life.

irvkay312

@colleenyoung

Let’s get the conversation started.

There is often a lot of confusion about the difference between palliative care and hospice care. Here is a succinct description from https://getpalliativecare.org

What is the difference between hospice and palliative care?
– Palliative care is for anyone with a serious illness. You can have it at any age and any stage of an illness, and you can have it along with curative treatment. It is not dependent on prognosis.

– Hospice is an important Medicare benefit that provides palliative care for terminally ill patients who may have only months to live. People who receive hospice are also no longer receiving curative treatment for their underlying disease.

On this page, you’ll find answers to Frequently Asked Questions about palliative and hospice care https://getpalliativecare.org/whatis/faq/#what-is-the-difference-between-hospice-and-palliative-care such as:
1. How do I know if palliative care is right for me?
2. What does palliative care do?
3. What can I expect?
4. Will my insurance cover palliative care?
5. Do I have to give up my own doctor?
6. Can I have curative treatment together with palliative care?
7. Who else, besides the patient, can benefit?
8. Where do I get palliative care?
9. Who provides palliative care?
10. Can I get palliative care if I am at home?
11. What is the difference between hospice and palliative care?
12. How do I get palliative care?

But these definitions don’t tell the whole story. It’s also important to hear the personal stories and experience. @irvkay312 @dawn_giacabazi @hopeful33250 what does palliative care mean to you?

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With me, having Islet Cell cancer disgnosed in 2009 my journey began with radiation, intravenious chemotherapy, targetted chemotherapy, until the last octreo tide scan showed mestasation to the liver. That point was where my Oncologist put me on Palliative Care (to treat the conditions that were treatable, primarily pain). Yet, when my updated CBC panel and Marker growth showed more changes, weight loss without tring, more pain and the cancer being in the blood through the liver, it was suggested I have a Hospice consult. After that consult, I was put into Hospice, since my treatments to cure are over; the condition is terminal and the cause from this point onward is “quality of life.” Live one day at a time with whatever significant problem you have, until you reach the point where it is terminal and there is no more treatment. That’s what I feel people should learn about, so that when the time comes, they can be satisfied and have the information with which to make these end of life decisions.

irvkay312

@hopeful33250

@colleenyoung @irvkay312 @dawn_giacabazi Ok, I’m learning something. I had mistakenly thought that hospice care and palliative care were one of the same, but not so. Thanks for beginning the conversation @irvkay312 and thanks for all of the information Colleen and thanks for sharing personal experience Dawn. Teresa

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One thing few people learn until it is too late is “Palliative care does
not treat the root cause of ones health problem or impairment. Whereas,
Hospice care indicates one has sought, had or come to end all treatment of
a root cause which is often terminal and can end their life within a
specified amount of time.

Waiting until decision time comes on ones care is not helpful to their
satifaction in Quality of Life instances. Having knowledge and insight
with which to make such decisions should be made while one is able and
competant to understand them.

irvkay312

@hopeful33250

@colleenyoung @irvkay312 @dawn_giacabazi Ok, I’m learning something. I had mistakenly thought that hospice care and palliative care were one of the same, but not so. Thanks for beginning the conversation @irvkay312 and thanks for all of the information Colleen and thanks for sharing personal experience Dawn. Teresa

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@irvkay312 You offer ideas that are well thought out and helpful I’m grateful for the wisdom that you share. Thanks again for sharing your journey. Teresa

Life teaches us many things as we progress through it. One is, that as we come to face the end or prolongation of it–“we should be as satisfied and understanding of the situations that lie ahead–Quality of Life we seek and endure.”

Yes, @irvkay312 so very true. Teresa

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