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Palliative Care: Supportive Care Resources

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    Posted: Sep 29 2011 at 11:26am

What is palliative care?

The World Health Organization defines palliative care as care focused on patients with life-threatening diseases. Palliative care can begin at any time after the diagnosis of cancer is made, regardless of the patient's age, stage of cancer, and treatment plans.

 

Palliative care is not necessarily end-of-life care. End-of-life care is a type of palliative care. If the patient's cancer cannot be treated, then the palliative care focus shifts to end-of-life care, which is often provided by hospice.

 

Most cancer patients experience symptoms caused by the disease or its treatments. Research shows that these symptoms, which include fatigue, pain, poor sleep, depression, lack of appetite, and weight loss, usually are not treated adequately. Often, cancer patients do not seek help for these symptoms and accept them as an unavoidable part of cancer. They sometimes feel that admitting symptoms is a sign of weakness. But uncontrolled physical or emotional symptoms can lead to increased suffering and decreased functioning and quality of life. They also can compromise a patient's ability to receive further cancer treatments.

 

Palliative care helps patients lessen and cope with symptoms caused by cancer and its treatment. The goal of palliative care is to prevent and relieve the suffering of cancer patients and to support the best possible quality of life for them and their families.

 

What is the difference between palliative care and hospice care?

The goals of palliative care and hospice care are the same: to relieve pain and suffering and to improve the quality of life. However, the patients who receive the care are different.

 

Palliative care helps cancer patients and their families at any time during the illness, starting when cancer is diagnosed. It can be given along with cancer treatment, and it can continue after cancer treatment is completed. Palliative care usually is provided in the hospital, the doctor's office, a clinic, or the patient's home. Some patients receive palliative care for years.

 

Hospice care is a type of palliative care that is focused on the end of life. It is for patients whose cancer cannot be treated. For a patient to be eligible for hospice services, the doctor must certify that the patient is expected to live six months or less.

 

Credit: US News and World Report article developed in partnership with The University of Texas MD Anderson Cancer Center.

Link to full article: http://health.usnews.com/health-conditions/cancer/information-on-palliative-care



Edited by ArleneB - Sep 29 2011 at 12:14pm
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Dear TNBC Foundation Family,

Palliative Care Supportive Care

From the US News article (prepared by MD Anderson Cancer Center) quoted above there are explanations about what palliative care can do for a cancer patient. Under the NCCN guidelines a cancer patient is supposed to be introduced to palliative care resources when first diagnosed with cancer. From my experience, this rarely happens.

It is extremely important to understand that this section is not about hospice. If anyone is interested in a hospice discussion please go to the forum on hospice. This forum is about services offered by palliative care specialists and I would like to spend some time in this thread speaking about these services.

I will be quoting extensively from the US News Report article. I think the question below (how can palliative care help cancer patients and their families?) is extremely important and one that will introduce some topics that we will cover in subsequent posts-

How can palliative care help cancer patients and their families?

Palliative care can help cancer patients by providing:

               Treatment of pain and other physical symptoms, such as fatigue, nausea, constipation, poor sleep, loss of appetite, and weight loss

               Treatment of emotional symptoms, such as depression and anxiety

               Advice on medical decisions that respect the patient's goals and beliefs

               Help with advance directives, documents that record the patient's choices for artificial life support and who should make medical decisions if he or she cannot do so

               Transition to hospice care if appropriate

The palliative care team can help families and loved ones with emotional issues or advice on caring for the patient.

This section includes information on how palliative care can help with:

               Breathing difficulties

               Depression and anxiety

               Fatigue

               Insomnia

               Nutrition and eating challenges

Pain


I am hoping that the wonderful folks in our TNBC Foundation family will post on the various topics within the forum-whether it is palliative care-supportive service in general or specific topics e.g. breathing difficulties, pain management etc.

Again, it is imperative that everyone here understands that cancer patients can use all of the palliative care services and still be actively fighting cancer via e.g. chemotherapy treatment. You do not have to stop chemo to receive palliative care.

I know all of this may be confusing to some. It was to me, as well because I equated palliative care solely with hospice and when you are e.g. on home hospice you can’t get chemo.  Unfortunately the various support services we will talk about and hospice are all under the Palliative Care umbrella, so it makes it confusing. This section will not be focusing on hospice, rather the many other palliative care services a patient can utilize.

About six months ago, I accompanied a patient to her visit with her oncologist. The patient had brain mets and was experiencing severe headaches. The oncologist had  recommended  she take extra strength Tylenol and I questioned why she wasn’t on something stronger. I can still hear his reply “I don’t want her ‘hooked’ on pain killers. She has enough problem with her cancer.” I know it’s an incredible story, but it’s true. Certainly other physicians recommend stronger pain medications in a situation like that but at times, even those are not sufficient.

If you are being treated at a major cancer center, most of them will have palliative care units. They may be called various names that don’t have palliative care in the title because of the association, mentioned above, that palliative care=hospice. I would suggest that you ask your oncologist about palliative care services. In some instances your physician may refer you to a palliative care physician and in some instances they will not and then the patient, often, can self-refer themselves to e.g a pain management clinic. Again, under NCCN guidelines it is recommended that doctors tell their patients about palliative care options early on.

It is my understanding that cancer can cause some very painful conditions.  That pain can, at times, be debilitating and compromise a patient’s quality of life. Under proper medical supervision I feel patients should try to be as pain-free as possible.
It is also pretty certain that if you are taking stronger pain meds for a period of time that you will suffer from constipation issues and the palliative care specialist should be familiar with different medications that can help alleviate that difficult side effect.

If you are suffering from fatigue, poor sleep, loss of appetite and weight loss these are also conditions that a good palliative care physician can help you with.  Nausea can also be a serious problem when you are in chemo. If a patient feels their oncology nurse/physician is not dealing with it effectively, again, palliative services may be able to help.

I am hoping that this will become an active forum and help patients find resources that they may have been unaware of.

with my love to all here,

Steve




Edited by steve - Sep 29 2011 at 12:47pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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As a former palliative care nurse, I would like to applaud the administrators for starting this forum.
 
Steve, great post, as usual.  Well thought out and straightforward.  Palliative Care is about symptom management.  It is underused and often misunderstood by physicians and other health providers.  There are times when doctors, nurses, social workers and chaplains will feel threatened because they might feel it infringes on their specialty. That is not the goal Palliative Care tries to work with all the members of the organization, coordinating what others are doing and filling in the gaps to be sure the symptoms, physical or psychosocial or spiritual are being met.  They often make recommendations, but are not always the discipline meeting the needs. For example, they may identify that the patient is under undue stress due to financial concerns and make a referral to a social worker.  They may identify that after trying many pain medicines, the patient needs a spinal infusion of pain relievers so they may refer to a pain specialist. Every hospital/clinic is different.  Not all will have a palliative care department, but many, especially larger facilities do and are working hard to utilize them correctly.
 
Never be afraid to ask for a palliative care consult if your doctors can't get your symptoms handled to your satisfaction. Don't ever think of it as "giving up the fight".  Studies prove that when palliative care is called in early, quality of life increases.
 
Thanks again. Great subject.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 12:58pm
Thanks, Barbi for your insightful, knowledgeable post. I too, commend the TNBC Foundation for embracing palliative care as a new forum.

Thanks for your kind words but the main thanks go to two palliative care specialists who have helped me immeasurably with much of the information in my post. I am uncomfortable mentioning them by name, until I have their permission to do so, but one is a Palliative Care Physician at a leading cancer center and the other is a pain management specialist at another well-known cancer center. 

Both professionals are totally dedicating with helping folks in need. They both have a ‘calling’ to do so. Two remarkable people. I am honored to have them in my life and by extension, in our TNBC family’s life as well.

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 1:33pm
This is a most insightful thread. I thought palliative care was hospice end of life care.
Is it actually a holistic approach to the whole person inclusive of everything. I think its great to bring this up.
Karen
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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Dear Karen,

most people feel that palliative care=hospice, solely. I did as well until about a year ago. Hospice does come under the palliative care umbrella but so do many, many other services. To avoid confusion The TNBC Foundation decided to split Palliative Care into two sections...supportive care resources and Hospice.

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 2:20pm

This is a very supportive site. Steve thank you

Karen
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 11:26pm
Steve and Arlene, I love the idea of people being able to discuss palliative care, and hospice (and yes, I know they're different), but I'm a little worried that the menu of forums is going to terrify newbies.  Know what I mean?  Before, a newbie would come to this site and see a bunch of forums, only one for metastasis/recurrence.  Now, a newbie shows up and the first thing she sees is a list of subforums dominated by 'worst case scenario'. I'm including the palliative care section because even though we here know that that doesn't necessarily mean hospice, in the general population that's going to be the first place their minds go.   At breastcancer.org there are forums for hospice and palliative care, but everything is broken down so minutely that you get a sense even from looking at the list of subforums that these are minority outcomes.   Here an already terrified newbie is going to curl up and hide in the closet by the layout alone. 

Is anyone else concerned about this? 

I think we should rename or eliminate the palliative care forum, or something.  It might be better if the balance of forums more accurately reflect the fact that even with all the doom and gloom around TN, most people do not develop metastatic disease or die of their cancer.

-Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 11:31pm
As it stands, my suggestion is that the title of this forum be changed to eliminate the word palliative.  'Supportive Care Services' sounds much more positive and will be less frightening to newbies.   You could keep the word palliative in the first post explaining what the forum is, if you like, but will get a lot more traffic and less negative splash if you cut it from the forum title.

What do the rest of you think of this issue?   Agree?  Disagree? 


d

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 12:03am
I applaud the foundation for discussing palliative care and hospice.  

Denise,  I see your point and agree that it may scare off the newbies.  Could these be subforums under the Mets/Recurrence forum?  When I first joined in 2009, I couldn't go beyond the Welcome and TNBC Talk forums.  I was so scared to read anything in the Mets section.  I just couldn't "go there" for the longest time.  Then I noticed all the posts to CarynRose and started reading them.  CarynRose was an amazing woman and helped me realize that I was strong enough to read about women with recurrences or mets.  I looked forward to reading her posts.  

Personally, I don't like all the forums at BC.org.  I know their audience is all inclusive to bc and not just a subtype like ours, but it's too much, too busy for me.  I think that's why I stay away from it.  Just my 2 cents. . .  

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11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 12:12am
Donna, so you don't think it might be too scary to leave these labeled and located as is?  I don't think people will want the hospice thread in met/recurrence, for the same reason they didn't want the tributes in that thread:  people with stage IV want to focus on living, not dying.  

Maybe it's fine as is and I am over-reacting. 

I agree with you that it's really great that the foundation is adding a place to discuss these issues.  
What do you think about changing the label on the palliative care section, since by the definition being used it is supposed to apply to early stage cancer as well as late stage?  Would it be too diluted if the word 'palliative' were left off?

d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 1:35am
Hi,

Glad Donna and Denise posted above.
Somehow when I saw Palliative Care and Hospice under met/recurrence......also thought is that best
place to have those forums. Then read Donna's and Denise's posts and agreed a different name might
be better.

Really like the above suggestion: "Supportive Care Services"
Or ? maybe   "Crossroads".   Some one else on forum (? Steve) has used that term.
Or ? other suggestions from other members.           
Question one forum with 2 sections: Palliative Care.
                                                                    Hospice.
                                                                    (with a Welcome to each section.)
                                        OR
       2 forums:
              a new forum for Palliative issues/info   AND   a new forum for Hospice issues/info
                  ( but having a more positive/neutral name for each forum. )
Question the forum(s) go to bottom of list of forums??????

Glad Palliative Care and Hospice issues and info will have a place of their own.
Thank you Administrators.

With a neutral title...... a newbie might go there once and then not return until able or wants to.    

Other ideas/suggestions?

Grateful for today................Judy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 2:34am
While I applaud the new additions, I think Denise has an excellent suggestion of changing the name. Supportive Care would soften the scare/fear factor.
kirby

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Lumpectomy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 4:48am
I am so pleased with the extension of the Forum to include these topics. I think they will be valued resources.

Because of the general confusion about the meaning of Palliative Care (and I subscribed to the end of life understanding before now), I agree with the suggestion to change that name. But my reason is not so much as from frightening newbies so much, but rather to make it more inviting for most people to visit at least once. Then, having read the very clear explanation of this form of care, those that want to, will post. But many may not even look into this thread, if they are already dismissing it as not for them at this time. And then a wonderful opportunity to help all the TNBC family realize these resources are there for the asking, might be missed.

Nevertheless, Bravo to the Adminitrators for taking this step. Thank you, too, Steve, for your contributions in bringing specialist knowledge to us from your contacts.

Deborah.

Edited by Debris - Sep 30 2011 at 4:49am
4/12 Xeloda/Tykerb
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 10:41am
I am hearing what you're saying, but not sure I agree. It's like calling breast cancer a breast lump so we don't scare people. Only through education and sharing of experience (like that mentioned on the other thread Steve currently started about the woman referred to "pain management") that people will learn and share what palliative care means.
Again, I DO hear what you're saying, but I don't feel like we have so many threads as to be confusing. Keep discussing - I love to hear thoughts and maybe an answer will come about.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 11:53am
This is what I love about this foundation and tnbc community.  We can all discuss openly and offer suggestions in a welcoming manner.  Now I'm leaning towards just changing the names of the thread/forum.  I like the Palliative Care:  Supportive Care Resources.  I think there's so much confusion and misunderstanding about palliative care and hospice.  I never thought palliative care would apply to me and reading what it includes is exactly what I'm going through, lol!  It's important to have a place where are members can go to these sections and learn more about them.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Dear Denise, Donna, Judy, Deborah, Kirby and all,

I understand your concerns and we struggled over what to call the forums but at the end of the day…palliative care is what it is and is defined by the National Comprehensive Cancer Network (NCCN) a well-respected national organization as an all-encompassing term that includes supportive services and hospice. If anyone has the time/desire to read the NCCN guidelines on palliative care it would be helpful to understand the background as to why the forums are named the way they are. The short reason for that is that we are accurately describing what they are.

Please do not be put off by the oralcancer link. It was the only way I could get the complete guidelines without folks having to register on the NCCN site, which I found cumbersome.

http://oralcancerfoundation.org/treatment/pdf/palliative.pdf

The core problem is that most patients and, I believe, even most oncologists associate palliative care, solely with hospice, which means to most patients ‘giving up’ and many oncologists never mention palliative care to their patients because they do not want to be viewed as ‘giving up’ by the patients they are serving.  According to the above guidelines, palliative care services should be introduced to the patient as early as at the time of diagnosis and from my personal experience with scores of women with TNBC I have yet to see that happen in an initial consultation. That is a huge disservice to the patients in my view.

Palliative care professionals recognize the semantics problem and at various institutions call palliative care services something else so avoid the commonly held perceptions that palliative care solely equals hospice. But, according to the NCCN palliative care encompasses many services in addition to hospice and I think The TNBC Foundation is correctly describing the two palliative care forums as per NCCN guidelines.

One of the landmark decisions of this board was introducing the Metastasis section. When I first came on this board almost everything was lumped into the Talk or Welcome New Members sections so that when a ‘newbie’ came on the board she or her loved one was inundated with some very upsetting stories from women who had a recurrence or a late Stage diagnosis from day one. That forum is now so integrated into our site that is accepted and is second nature to us, especially those of us who are trying our best to participate meaningfully on that forum.  If a ‘newbie’ comes on the board and wants to discuss her TNBC and she does not have metastatic disease I believe she will ‘know’ to go to the Talk or Welcome New Members sections and not Metastasis. TNBC Foundation’s attitude, correctly so, was that a person understands that the Metastasis section is for folks with metastatic disease or for folks who want to read about metastatic disease. We did our family a great service by splitting the forums in this manner and we found that most women were not ‘scared away.’ It was important to bring some sunlight on metastasis. Unfortunately, all too often, it is a fact that needs to be understood and dealt with by our community.

Similarly the Tributes section is important. I think a ‘newbie’ coming on the board might say..”wow people are dying here…I don’t want to read about that” and the reader has the option to not click on that subject and I think most don’t click on it if they don’t want to and, instead, go to other forums. But for our community, as the last month has shown, we desperately need a place to go to honor those in our family who have passed even if it upsets some women to see such a forum.

Many palliative care professionals struggle with the all-encompassing palliative care label that includes supportive care services (other than hospice) and hospice, itself.
Some institutions have created various units and named them e.g. pain management clinics or some other title to avoid the palliative care label. But at the moment it is what it is and it is my very strong believe that there is a palliative care movement, around the country, that in the next decades will make the words palliative care more recognizable as an important service for folks fighting cancer as well as those who are embarking on a hospice course.

Perhaps it would be better if the NCCN had two separate categories “supportive services” and “hospice” but until they do I think it is important for The TNBC Foundation to accurately represent what the guidelines are and that is “Palliative Care” that includes supportive services on a variety of issues such as pain, anorexia, nausea and vomiting, constipation, insomnia and sedation, psychosocial distress and even advance care planning.

The NCCN guidelines, referred to above, run 50+ pages and they are quite complex to read…By the way, they guidlelines were  published 5 months ago in April 2011.

some final last thoughts (I hear some of you applauding..sorry so long)-

from the guidelines-

Definition of palliative care (my emphasis)

Palliative Care is both a philosophy of care and an organized highly structured system for delivering care to persons with life-threatening or debilitating illness. Palliative care is patient and family-centered that focuses upon effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to 
patient/family needs, values, beliefs and culture(s). The goal of palliative care is to prevent and relieve suffering and to support the best  possible quality of life for patients and their families. Palliative care can be delivered with life-prolonging care or as the main focus of care.

Standards of Palliative Care

-Institutions should develop a process that ensures that all patients have access to palliative care services from the initial visit.
-All cancer patients should be screened for palliative care needs at their initial visit, at appropriate intervals and as clinically indicated.
-Educational programs should be provided to all healthcare professionals and trainees so that they can develop effective palliative care knowledge, skills and attitudes.
-Skilled palliative care specialists and interdisciplinary, palliative care teams should be readily available to provide consultative or direct care to patients/families who request or require their expertise.
-Clinical health outcomes measurement should include palliative care domains
-Quality of palliative care should be monitored by institutional quality improvement programs.

and finally (more applause..will this guy ever stop? and again my apologies) from the Palliative Oncology section (again, my emphasis)

While palliative care previously focused on end-of-life care, there is increasing understanding that palliative care needs to be integrated earlier into the continuum of cancer care, it needs to exist right from the time of diagnosis through survivorship and/or end-of-life care. Palliative care should begin with the presentation of symptoms even before the source of those symptoms has been fully determined..

A remarkable recent study showed that early introduction of palliative care can not only improve quality of life for patients with advanced cancer but can also improves survival.



I agree that the strength of this website is open, respectful discussions. I am hoping the marvelous women on this forum and their loved ones will give the Palliative Care forums, as presently constituted, a fair chance to succeed. Who knows, with our increased awareness of what palliative care can accomplish in bettering a cancer patient’s life, one of us will actually recommend palliative care services to someone in need and be prepared for the negative response and be able to respond in a helpful way.

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2011 at 5:51pm
Well, I'm not real smart and I know that, but I had never heard the word palliative until well into this process when Barbi was kind enough to explain it to me.  We were blessed with some excellent chemo nurses who guided us on many of these issues, but it sure would have been nice to have a "go to" person between infusions and to have this discussed at the time of diagnosis. We, like many others I'm sure, were somewhat reluctant to call the doctor every time a side effect reared its head (like constipation for example) and if we did call were often left with getting the on call doctor for such questions. I think these forums are wonderful and I am anxious to see what develops with these new ones. Thank you all!
 
Martin
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2011 at 10:24am
This thread is a milestone in this journey we share and it's my 2 cents that it is good to remember that it is a journey where our feelings and comprehension of our situation and those around us indeed evolves.
 
Just a personal experience but I know when I first came on board I barely touched on the various Forums, just went to the Polls, New Member and Talk...I was too exhausted to venture further for sometime and instead relied on various members to open doors virtually one at a time so I don't think I would have even seen or been interested in a thread with the word Pallative in it.
 
But time and care and questions change and what threw fear my way initially was treated and followup problems that brought fear back were also addressed, each and every step it seemed was anticipated by the Forum and her members so that now I anticipate whatever happens, the Forum will be there for me.
 
So I'm not so certain, at least for the moment, that this thread should have its title or location softened. It gives me comfort instead just where it is. If I had to rename it I might suggest something like Beyond Stage IV - Pallative Care...with the first line of the thread something very supportive like Welcome, this thread is to support and inform you in the continuing spirit of the Forum...
 
I'm just so relieved to see this make its way to the site, it's taken alot of courage, thank you all.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2011 at 2:07pm
Dear Mainy,

thanks for your insightful post...

I think it is important to note that there are two parts to palliative care...one is supportive care services while you are actively fighting the disease, including taking chemo or doing radiation therapy etc. The idea is to help the patient through the active part of the journey...

The beyond Stage IV as you called it is hospice or end-of-life care.

Hopefully, in time, these forums will be of use to folks...

thank you again,

Steve

p.s. I wish everything wasn’t under the same 'palliative care' umbrella..but at the moment, it is what it is....

sorry I have to run...will try to write more tomorrow..


Edited by steve - Oct 01 2011 at 2:08pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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