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 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?

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Yes, the intravenious Adriamyacin and Streptozocin I was told could cause problems in later life. I didn't think much of that at the time. Yet, instead of the heart being the area of concern in later life "the chemo did a job on my kidneys, per my Nephrologist." In 5 years, it took away my ability to get a full nights sleep without having to empty my bladder every 1 to 2 hours. It also indicated a change in my blood panels and they began getting taken more often. Those are reasons to stay on top of the matter if you can and seek Quality of Life in Palliative or Hospice Care. The last medicine used was Sandostatin, again said to shrink the tumor in 2016--after 2 shots of it I Quit because I couldn't live with the adverse affects it imposed on me

irvkay312

REPLY
Kay | @irvkay312 | Jul 13, 2016

Insofar as treating a chronic condition with Palliative Care, fine; however, if the condition is Terminal and there are 6 months of life or less determined by doctor many Palliative items won't be covered by federal law that Hospice covers. Another item that can and often differs is location--United States vs Canada vs Overseas, etc.

irvkay312

REPLY
2 replies
Kay | @irvkay312 | 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

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While some institutions do like you say, "they are often in business to make money in support of their programs." Yet when the situation gets to oneself the picture has to change not to money, but to oneself. Also, National Palliative Care often will treat the symptoms of a condition; that's because the root cause (if terminal) likely cannot or will not be treated any further--per doctor, tests, one self and family decisions.

irvkay312

REPLY
Kay | @irvkay312 | 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

That is right for the most part. However, when I went through my radiation<br>and chemo; I was told that "it's the policy of this group (doctor/practice)<br>to inform you of future concerns that this chemo could bring to your<br>health." Additionally, when I was given the medicine of Sandostatin to<br>"shrink the tumor size, by the 2nd. shot--the question posed "was how are<br>you doing with this and how are the adverse affects treating you?" At that<br>point, was when I could no longer take the adverse affects and discontinued<br>its use in lieu of A Greater Quality of Life.<br><br>irvkay312<br>

REPLY
Kay | @irvkay312 | 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.

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I went over that site and disagree in some respects. That site is in<br>Canada. Canada has different practices, as do we in America, or others ing<br>United Kingdom, Norway, etc. have and practice.."<br><br>irvkay312<br>

REPLY
Kay | @irvkay312 | Jul 14, 2016
In reply to @irvkay312 "Insofar as treating a chronic condition with Palliative Care, fine; however, if the condition is Terminal..." + (show)
@irvkay312

Insofar as treating a chronic condition with Palliative Care, fine; however, if the condition is Terminal and there are 6 months of life or less determined by doctor many Palliative items won't be covered by federal law that Hospice covers. Another item that can and often differs is location--United States vs Canada vs Overseas, etc.

irvkay312

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Here is the latest, but it's not giving up--its's facing reality. I pursued with my Hospice Team, Management and Nursing Staff at residence "my need to move next door (to our Care Center and be around trained and knowledgeable personnel, should I face anything that I would be puzzled in trying to resolve on my own," Therefore, tomorrow morning I'm touring available rooms at The Care Center and preparing factors relative to end of life items--since I know it's on its way and moving slowly--as this form of cancer does. The decisions I'm making at this time, I have no second thoughts about, only the certainty that there the right ones to make and be satisfied with. From that point, I seek the safety you can attain by being around a trained staff; so that my anxiety at such a time remains in control instead of it controlling me. I'll still be in touch and keep you updated on these pursuits.

irvkay312

REPLY
Dawn, Alumni Mentor | @dawn_giacabazi | Jul 14, 2016

@irvkay312 the most bravest decision one can make. Absolutely not giving up!! It's choosing quality of life over quantity. My thoughts and prayers are with you each & everyday!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 14, 2016
In reply to @irvkay312 "Insofar as treating a chronic condition with Palliative Care, fine; however, if the condition is Terminal..." + (show)
@irvkay312

Insofar as treating a chronic condition with Palliative Care, fine; however, if the condition is Terminal and there are 6 months of life or less determined by doctor many Palliative items won't be covered by federal law that Hospice covers. Another item that can and often differs is location--United States vs Canada vs Overseas, etc.

irvkay312

Jump to this post

@irvkay312 You continue to display such wisdom and grace as you travel this road. I know that I've expressed my appreciation for your attitude and actions, but just want to reiterate that. You have set an example for me and I'm grateful for it. I continue to pray for you. Teresa

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 14, 2016

@irvkay312, I agree with Teresa and Dawn. The gift that you are giving to others by sharing your experience is valuable beyond words. Thank you.

REPLY
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