1. < Loss & Grief

Palliative Care and Hospice Care

Posted by Kay @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

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Kay | @irvkay312 | Jul 10, 2016
In reply to @colleenyoung "Let's get the conversation started. There is often a lot of confusion about the difference between..." + (show)
@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

REPLY
Kay | @irvkay312 | Jul 11, 2016
In reply to @hopeful33250 "@colleenyoung @irvkay312 @dawn_giacabazi Ok, I'm learning something. I had mistakenly thought that hospice care and palliative..." + (show)
@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<br>not treat the root cause of ones health problem or impairment. Whereas,<br>Hospice care indicates one has sought, had or come to end all treatment of<br>a root cause which is often terminal and can end their life within a<br>specified amount of time.<br><br>Waiting until decision time comes on ones care is not helpful to their<br>satifaction in Quality of Life instances. Having knowledge and insight<br>with which to make such decisions should be made while one is able and<br>competant to understand them.<br><br>irvkay312<br>

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 11, 2016
In reply to @hopeful33250 "@colleenyoung @irvkay312 @dawn_giacabazi Ok, I'm learning something. I had mistakenly thought that hospice care and palliative..." + (show)
@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

Jump to this post

@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

REPLY
Kay | @irvkay312 | Jul 11, 2016

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."

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 11, 2016

Yes, @irvkay312 so very true. Teresa

REPLY
Kay | @irvkay312 | Jul 13, 2016

@colleenyoung I came across an item that can affect us all in many ways and which I requested be added to our discussion a while back. Primarily this subject relates to Cancer. It is on http://www.Cancer.net. It is easy to understand and has many sections to it--basically who, what is a Palliative care team and what, who is a Hospice care team? What are the responsibilities of your team members? Also, how advocates have come to learn about Advocacy Burnout in wanting to help others but having not to over do it.

irvkay312

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2016
In reply to @colleenyoung "Let's get the conversation started. There is often a lot of confusion about the difference between..." + (show)
@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?

Jump to this post

@irvkay312 - I want to focus on one sentence in particular. You said "Some of those chemo elements brought more hardship on, or lessened the operation of other body system organs."

This was the case for my Dad too. While the palliative chemo may have prolonged life, he found the extreme side effects too hard to manage and couldn't enjoy what was left of his life. Thus he chose to stop chemo and lived for another 8 months and enjoyed very precious time with my mother.

I should note that the chemo would not have "cured" him at this point. Its purpose was to shrink the tumor and give him a little longer.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2016
In reply to @hopeful33250 "@colleenyoung @irvkay312 @dawn_giacabazi Ok, I'm learning something. I had mistakenly thought that hospice care and palliative..." + (show)
@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

Jump to this post

Some institutions also refer to palliative care as supportive care or symptom management. It is important to note that a patient can receive palliative care at any stage of disease, not only when the end is near. People should not be afraid to ask about palliative care early during their journey with a chronic progressive condition.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2016

@irvkay312 Is this the booklet from CancerNet / ASCO that you were referring to? http://www.cancer.net/sites/cancer.net/files/palliative_care.pdf
They also have videos about palliative care http://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care

Here's the blog post about advocacy burnout http://www.cancer.net/blog/2016-07/how-i-try-avoid-advocacy-burnout

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2016
In reply to @dawn_giacabazi "@colleenyoung At the end of life, each story is different. Death comes suddenly, or a person..." + (show)
@dawn_giacabazi

@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.

Jump to this post

Such an important point Dawn. I asked this same question "What does hospice and palliative care mean to you?" in another online community called Virtual Hospice http://bit.ly/29Ql1sC. One member stated “Hospice allowed me to be the caregiver, husband, and champion for [my wife]." It is really hard to be the daughter and the caregiver at the same time.

REPLY
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