Let’s talk about palliative care
I just finished a pretty interesting book about living with serious illness. It spoke about the benefit of getting a palliative team onboard right after a serious illness (metastatic cancer was specifically mentioned) diagnosis.
Has anyone done this? If so, what was your experience? I understand palliative isn’t necessarily just hospice care. I’m 3.5 years in with my MBC diagnosis and am doing well. My MO tells me all the time that if he didn’t know better, he would never guess that I am a stage iv cancer patient.
Just curious if anyone has called in the help/support of a palliative team when they are still doing every day normal things; working 40 hours a week, volunteering, living independently and supporting yourself.
The book was very enlightening and is forcing me to consider things I always pushed off such as what type of treatment I want at different stages and what my goals are now while I’m doing well on treatment.
Thanks as always for your insights and opinions.
Comments
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This is from my hospital, but might be representative of other services.
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finallyoverit - Sorry I have no experience, but I'd be interested in reading the book. Can you share the name & the author?
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I entered into Palliative Care in 2016. This group was located within my Oncologist's office. I was met by a NP who explained what they do. She provided me with a physical therapy Rx, talked about their experience with pain meds, and how they provide counseling services. I call as needed. Recently, I just needed to talk about my progression and how to handle the darkness. My DH was allowed to accompany and the NP gave me suggestions on coping. It is a really nice service.
Palliative Care is NOT Hospice..just another support opportunity when dealing with Stage IV, noncurable cancer.
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Finallyoverit- I have read on here about some of our BCO ladies receiving Palliative Care. I also have attended some online virtual MBC conferences lately (thanks to Covid). They also speak about having a Palliative Care program in place for those dealing with MBC. I would love to have that option. But.... my local rural cancer center doesn't have Palliative Care. And then I changed to a larger cancer center 2 hours away and, shocking to me, they do not have Palliative Care either.
From the way I understand it, Palliative Care works with pain control, side effects of our various treatments for MBC, mental health, etc for those with a life limiting illness like MBC.
You mentioned still working and being independent. I am not in the workforce, but I am still independent and managing my own home.
I think if you have access to Palliative Care you should get your foot in the door, so to speak. You could be an established patient and see what they have to offer. Then, when things change-- treatments or progression-- you could utilize more that they have to offer.
Like I said, I wish we had something in our area. When I asked both cancer centers, my local one and the new bigger one, they both said it would be a good thing for the patients, but unfortunately we do not have the program set up. Guess it would be a team-- doctor, nurse, social worker, etc.
Let us know what you decide and if your area offers it and what it is like.
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The book is called “life after the diagnosis” by Steven Z. Pantilat, M.D. The ISBN is 978-0-7382-1938-7 -
@Sandi and Candy ~ thank you for your input. I’m seriously considering looking into it. Thankfully I’m doing well now, no issues with pain but could use the mental support and perhaps some PT to help with the neuropathy.
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My DH has extensive bone Mets, I am currently NED. He says he has discussed palliative care with his pcp, she says she can handle it. He is also developing signs of dementia, maybe from pain meds. He shouldn’t be driving either. His pcp doesn’t know about that, apparently, and I sure could use some help. A care team could help both of us, but I don’t know how to access. It’s not just for pain management. So if you can get it, use it
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Spookiesmom, we're so sorry to hear what you and DH are going through. Have you reached out to a Palliative care doctor, who can also help manage the cognitive concerns, especially if from the pain meds.
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I don’t know how or where to find such a dr. My MO? My pcp? Hospice?
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I would start with your or your husband's oncologist. They should have information on what's available in your area.
Hope you're able to get some help soon.
Trish
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@Spookiesmom ~ the book suggested exactly what JavaJana stated. To Google “palliative care” and your location. I hope you are able to find someone close by. They seem to offer some pretty amazing services. The more I research, the more interested I’m becoming.
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Hi Finallyoverit,
I also read that book a couple of years ago. While I’m still going strong (work full time at a demanding job although now hoping to scale back) I’m a planner. I like to be prepared for what lies ahead. This is particularly important to me given that I am single with no children. I need to navigate a path through this on my own and seek support where I can get it.
In my area, palliative services are delivered by our local hospice. It’s something I am just beginning to explore now as, like many, I don’t have a clear picture of what that entails. They do encourage people to register for the services early rather than waiting until things become more dire. Registration here is through a referral from your oncologist or primary care physician. You need to live in your own home (not in a hospital or care facility) and have a life limiting illness to access their services.
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@Sadiesservant ~ thanks.. same here. I’m single with no children so I’m doing this on my own. Aside from a few immediate family members, exactly 1 friend knows. I am not comfortable as the center of attention and as well meaning as they would be, I do not want every single convo to start with “how are you? How are you feeling? You look good.” Ugh
I’m going to ask my MO about it, but I’m definitely intrigued, just for the mental support if nothing else. Sometimes it’s hard not to have anyone to talk to that understands. Not hard enough to spread the news.. but hard.
I do think when the time comes, hopefully another 20 years from now, I’ll enter some sort of assisted living home. It’s really the only choice I have. Hoping I don’t need it for a long while. It’s unlikely that I’ll ever be able to retire while I’m still feeling well. I think it’s going to have to be a medical reason that forces me out of the workforce. Not that I want it that way.. I don’t have another choice. Have I said lately how much I hate BC? Especially MBC
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Interesting Sadiesservant. My area does not have Palliative Care EXCEPT for the homebound or nursing home resident--part of a Hospice Program. If not homebound, like me, there is no services.
I too am single with no children. I would think these services would be good for those of us that have limited support people. But I am not homebound, so I do not qualify for what limited services we do have in my area.
Finallyoverit- I am very open about my situation. My church knows, friends know, family, etc. I guess I try to "teach" them about MBC, in a way. Explain about scan, treat, repeat. That I will always be on some form of treatment. People are clueless. ..... YES people are clueless. "You look good".
Yes, it is hard that I have no one to talk to that understands. That is why this site is so important to me. You all are so important.
I want to die in my own home. In my bed. I guess we never have a choice really, and with no husband or kids this might not be a reality. I don't want to die in a nursing home. I love my home. I will fight tooth and nail to stay in my home.
You would think that our cancer centers would screen the patients, asking how much of a support system they have, and then get us with limited support systems some added services. But, I guess that is not how it works.
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Palliative Care (PC) can be a very important component of care for those of us with MBC. It differs from Hospice Care in that the individual does not need to be near end-of-life and can remain on their treatment.
Below from my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf, is an excerpt from the chapter about Palliative Care. For information about MBC, approved treatments by subtype, finding clinical trials, and cutting edge research and more, please visit https://www.insidersguidembc.com/about
Palliative care is meant to help anyone with a serious illness by maximizing their comfort level as much as possible. It differs from hospice care in that the patient does not need to be near end of life, and they can continue to receive standard treatment while on palliative care. Patients can request it at any age and any stage of an illness (even upon diagnosis), and it can be used along with curative treatment. Palliative care is not dependent on prognosis. With palliative care, patients can expect to have more control over their care, along with a comfortable and supportive atmosphere that reduces anxiety and stress. The patient's condition and situation are reviewed regularly by their palliative care team, and they are discussed with the patient to make sure that the patient's needs and wishes are being met and that treatments are in line with the patient's goals.
Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It addresses the whole person and helps them to carry on with daily life. It can improve one's ability to go through medical treatments and help the patient to better understand their condition and choices for medical care. In short, it enhances the patient's Quality Of Life (QOL) and also may extend life. As per Cure Magazine's winter 2019 publication, a study of 2,307 records of advanced cancer patients determined that patients who received outpatient palliative care survived 4.5 months longer than those who did not.
Therefore, patients should start palliative care early for best results (although it may be requested at any time), and patients should request it from their doctor instead of waiting for their medical team to bring it up. It is important to note that caregivers are also able to receive palliative care.
The American Society of Clinical Oncology (ASCO) has updated their guidelines to state, "in-patients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to an interdisciplinary palliative care team is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services." From: https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/patient-and-survivor-care#/9671
Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment. Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home. Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient's doctor. Massage therapists, pharmacists, nutritionists and others might also be part of the team. To obtain palliative care in order to manage cancer or treatment side effects, the patient should speak with her or his doctor or nurse. Alternatively, patients can look up Palliative Care providers in their area at: http://getpalliativecare.org/providers/
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Thank you Bestbird. You stated Palliative Care beautifully.
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Thank you Bestbird. That explains it very well. Unfortunately it is not offered in some areas. I am in a rural area and we do not have it. But also, surprisingly, my new University based larger cancer center doesn't offer it to their patients either. Such a shame as it could really be of a help to many. If you live in an area that has it, definitely take advantage of it.
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So I just had my first Palliative Care Zoom appt. Let me explain.
I posted on here that my local cancer center (rural) does not offer Palliative Care. I moved to a larger cancer center-- University affiliated-- and at my appt in Sept I asked MO if they have Palliative Care for the patients. She said No. I was surprised and disappointed. I saw a flyer for a virtual health fair set for the first week of Oct. I logged on to the health fair and saw that they offer free (not billed to insurance) counseling services for the cancer patients. I scheduled appt (Zoom too). The counselor said that it is 8-10 sessions. I said I wanted something long term like Palliative Care. She said "we have Palliative Care". She gave me a phone number. I called and made todays appt (Zoom).
So today I met with a doctor, a Social worker, and someone else? Me and 3 others. I told my story and kind of what I was looking for. I said I have been stable for 3 years and on first line therapy so I have learned to adapt. Depression at times, but still up and going. Side effects of meds, but dealing with it. Good appt but still unsure of what really they will do. I am to see them again in 3 months. Having next scan in 2 months so we can see if I have progression or treatment change. They did say they are here for the long haul and will work with me as things change.
I am happy I have this in my arsenal now, but hoping I won't need them any time soon.
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I wish we had palliative care where I live. The closest palliative doctor to me is a bit over a hundred miles. I’m trying to manage other chronic illnesses including colitis with the cancer. It’s hard to figure out who to call about symptoms eg is it Verzenio causing tummy troubles or is it a colitis flare up. I’m also single and it’s hard to know how much burden to put on friends.
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lehrski- This Palliative Care team is a 2 hour drive, one way, for me. So it is not really convenient, but better now with Covid and Zoom meetings. Once Covid over, it will be a long drive. For what services? As I have thought about my appt today, I really don't feel I have a handle on what they will do for me. I mean, I am stable--so far-- and I do not see them again for 3 months. I too have other health issues-- rheumatoid arthritis, chronic low back pain, I wonder if IBS (though not diagnosed). Today seemed to be a meet and greet and I am now thinking I really do not understand it all. There was a doctor, but what is her role? There was a Social worker and she asked about a living will. Then there was someone else, I cannot remember her title. Seems that there really isn't much to do until things get worse with the cancer. Is that the way it should be???? I think I will call them tomorrow and ask some more questions. I feel confused after my today's appt.
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Candy, even though the call today was only introductory it's a good thing to get set up , just in case. I have been thinking about doing the same. I did talk to a social worker at my cancer center when I received my stage IV dx - kind of felt like you did....asked about a living will, they are there if I need them etc. At the time I was still waiting to see how I felt with treatment, how I would respond etc etc. I guess if and when things change, I can set up another appt. My cancer center is a good hour away from me (with a car ferry ride). They do have some cool programs like integrative medicine, yoga, meditation etc. I have never been able to take advantage of these "improve your quality of life " classes due to my work and distance (I am not going to ferry commute to take a free yoga class, for example). However, with Covid I have been able to work with the Integrative Medicine group to help me learn to meditate. It has been pretty nice! That is probably one of the few benefits of zoom that I can think of
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candy- Will be interested in following your meetings to under more. Seems like "palliative" is thrown around alot, but not yet defined outside of end-of-life. When I switched MO last year, she had me speak w/nutritionist. Also a counselor called to offer her services, but by that time the Lexapro and different treatments that I could handle had kicked in and lots of my depression was under control.
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Candy, I think it's great that you at least were able to connect to a palliative place via Zoom. Really, you should commend yourself for searching and finding and reaching out. So many of our interactions with the medical field concerning mbc are learning experiences for us. Who knows how effective this place will be, but at least it is one more small part of support where you may be able to turn for insight.
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So I called the Palliative Care office and asked some more questions. They are a "small department" she says. The 3 ladies I met with was an Outpatient Palliative Care doctor, a "Fellow" doctor, and a Social Worker. The doctor and the Social Worker will be my team, the "Fellow" will be there a year to learn. They have a Chaplain and other doctors that work more on the In-Patient side of things. They do not have acupuncture, yoga, meditation, etc. They do not offer counseling services. She said to think of the doctor like a PCP-- observes all issues and coordinates to help with things to help QOL. Plan right now is to meet every 3 months or so--- my next scan is Dec 21 and Palliative Care appt is Jan 5. If progression and treatment changes, then we will have more to discuss. If still stable, then more a check-in visit, I guess. Coast until they are needed more.
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I'm meeting with a palliative care team in mid November. Does anyone have any advice on what to cover in the first visit?
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Who handles pain control. Who handles getting any equipment, like walker, bed, bathroom needs. Respite care. I’m confused between palliative care and hospice.
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Buttonsmachine- I just had my first visit (Zoom). It was more a "meet and greet". Learning each other. I will have another visit after my next set of scans to discuss stability (I hope) or treatment changes. I would say think about what you want to get out of the meeting. Do you have treatment side effects that bother you? Do you have family concerns? MO concerns? See what they offer with their services--seems each area offers different things. Sandibeach (4th post in this Thread) said hers offered counseling. Mine does not. Read this Thread's posts if you have not already.
Spookiesmom- My team has a Social Worker. I do not need those supplies, but I bet that is who I would talk to if I needed DME's (home medical equipment). My Palliative Care doc prescribed some muscle relaxants she thought would help my situation. I have not went to pick up the script yet. They did say they work closely with my MO, so I would say they run options by my MO so she knows what meds I am put on. They told me Hospice is expected death within 6 months. Palliative care is more long term help with QOL. She said to think of my Palliative Care doc kind of like my PCP--more long term help.
Hope this helps. I am learning as I go along too.
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My palliative care team in texas is just disappointing.
When I first went to them i saw the head doctor. She said i was not sick enough for her, said i see no reason for your pain from looking at my scans. My chart i guess had not made it over. I was just changing over to there big system. She made me feel very bad. Like i was wasting her time.
I am in my 8th year with MBC...the palliative care team only treats pain if it's from active cancer. I have pain from the 2 years i was on chemo. Fine i have my own pain doctor
I made another appt. To see if they could help fill my anxiety med. Nope. I got a referal to psychiatrist.
I thought palliative care could help reduce some doctors appts. This UTSW palliative care team has been disappointing.
https://youtu.be/scUST2-PVkY
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