Palliative Care Issues

 Laurl at ONS 

Thank you for attending today's chat on palliative care. Today's expert is Pam Malloy. Thanks for joining us Pam!

 Pam Malloy 

Is anyone currently taking care of a patient who would benefit from palliative care?

 Pam Malloy 

If so, what does that patient look like?

 Laurl at ONS 

We just began - here are Pam’s first comments: Is anyone currently taking care of a patient who would benefit from palliative care? If so, what does that patient look like?

 Laurl at ONS 

Leahma, where are you hailing from?

 leahma 

I am from RI and I work in outpatient infusion

 Pam Malloy 

Great!

 leahma 

a majority of my chemo patients would benefit from palliative care

 Pam Malloy 

Do the majority of your chemo patients receive palliative care?

 leahma 

from what I have to offer yes

 Pam Malloy 

That's great! Do you have good relationships with your oncologists so that you can talk about patients who could benefit from pc?

 sharon 

Sorry, I had to step away. I am from Illinois and work at an out pt. radiation therapy center.

 leahma 

we work well with the Oncologists but it is the other

 Pam Malloy 

Great, Sharon. It's always great to get input from the radiation nurses.

 leahma 

oops...it is the nutritionist, the pain management specialists, etc that I do not have

 Pam Malloy 

Well, certainly palliative care is about interdisciplinary care. Do you have weekly conferences with the group (including nutritionists, pain mgt, etc) to talk about these patients?

 leahma 

no

 sharon 

We get pts with brain mets and are considered palliative care.

 Pam Malloy 

It can be difficult to navigate through this if not all team members are on board. Do you know if they have a basic understanding of what palliative care is?

 leahma 

inpatients obviously have more access to that kind of structure

 leahma 

I am trying to get our outpt to have the same care...

 Pam Malloy 

Sharon, what do you think about your patients with brain mets being considered for palliative care?

 Pam Malloy 

Sure, and I think that is where the problem lies is in out-patient settings. They sometimes "fall through the cracks."

 Pam Malloy 

Since you have a great relationship with your oncologists, that is so wonderful, as many oncology nurses constantly have to communicate with their colleagues about the benefits that a patient could receive from pc.

 sharon 

Palliative care seems to be very confusing to almost everyone. I think most of our cancer pts. Could be in that category but for insurance purposes are considered "curable".

 Pam Malloy 

Yes, Sharon. You have hit a very important point. If palliative care is confusing for us in healthcare, how confusing can it be for our patients?

 leahma 

So is pc not billable and that is why I have a hard time offering more services?

 Pam Malloy 

Just a quick review of the goals of palliative care.... PC is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies.

 leahma 

and it is so very important for the success of a patients care

 Pam Malloy 

Palliative care and paying for it....good question. It varies from institution to institution. In some, hours are billable. In others, philanthropic funds cover the costs. Some insurance companies will also pay for it. Of course, if you know a patient has 6 months or less, then they can receive hospice benefits. Medicare pays for this for the elderly.

 Pam Malloy 

The great thing about palliative care is that it not only provides pain and symptom mgt for the patient, but also deals with grief/loss issues (anticipatory grief) for both pt and family members and continues with bereavement support up to 13 months after the death of the loved one. Spiritual care is also provided.

 leahma 

So how does a pc program look in an outpt setting?

 sharon 

I feel that "palliative" care usually means end stage to most of us and I don't think it is usually covered by insurance. I need to look into this in my area. I often think of palliative care and hospice as one in the same.

 Pam Malloy 

What about your patients with less critical cancers (i.e. stage 1-2 breast, prostate cancers, etc.) yet they are elderly and have comoribidities such as CHF, HTN, and diabetes. These patients could certainly benefit from pc, too. Especially if there is not a lot of family/friend support.

 leahma 

Because a I believe pc can cut a lot of hospitalization time out of the picture

 Pam Malloy 

Great question about pc in an out-patient setting. There are many models for this. Some have the pc team from the hospital come to the clinic to see the patient. Others send the patient to a pc team (either at the nearby hospital or hospice). The Center to Advance Palliative Care has some great resources on this: www.capc.org

 Pam Malloy 

Also, if there are pain nurses in in-patient settings, many times, they also provide consults to clinic areas.

 Pam Malloy 

What works perfect, is that when patients come to the oncology clinic, they also have an appointment with the pc team—prevents them from having to make a couple of extra trips to the clinic.

 Pam Malloy 

Also, refer back to the previous 2 chats we have done on this topic. There is some info there that you might find helpful.

 Laurl at ONS 

Chat transcripts are located at the Hot Topic website - www.ons.org- CNE- Index- Live Chats.

 Pam Malloy 

The hospital near me has a palliative clinic that is open 2-days/week. They have done a great job of getting the word out to area docs, so they can refer their patients there. Again, lots of different models.

 leahma 

I would love to see 'the team' come to the patient. I will definitely be refer to your previous chats

 jreid 

Pam who makes up our pc team?

 jreid 

That was suppose to be your not our. We don't have one.

 Pam Malloy 

Yes, it needs to be what is easiest for the patient/family. These patients are many times already very compromised. It would be great if there was a "one-stop-shop" that the patients could see both their oncologist and pc team.

 sharon 

Most oncology physicians, at least the ones I deal with want to treat the cancer only and send the pt. to their primary care physician for other issues. We do not have a PC but I can see from this chat how beneficial it would be.

 Pam Malloy 

Who makes up the pc team? The one near me has a pc physician who works 1/2 time at the hospital and 1/2 time at the hospice. Primarily, the team is made up of 2 APN's who are certified in hospice care. They also have a team of chaplains and social workers on board, too.

 Pam Malloy 

Sharon, it's great that your oncologists see the need to send patients on to other docs to get pain and symptom mgt.

 jreid 

I find in our facility like sharon stated the oncs only want to work on the cancer no matter what sometimes what is best for the patient is lost to how to treat the cancer.

 Pam Malloy 

Also, I want to give you a couple of other resources to review. If you would like to learn more about palliative care, attend an End-of-Life Nursing Education Consortium (ELNEC) course. www.aacn.nche.edu/ELNEC. Also, check out http://ecampus.stanford.edu—the Palliative Education Network (CANCER-PEN). Great resources, too.

 leahma 

We spend time trying to be all these things ourselves! I work in a 2 nurse dept

 Pam Malloy 

Yes, I agree. That's why we have to be educated in pc and advocate for our patients.

 leahma 

I attended ELNEC to help

 sharon 

I look forward to reading the article on Palliative care in the August issue of clinical journal of oncology nursing. (I'm behind in my reading).

 Pam Malloy 

Leahma, yes, I understand. As nurses we do try to be all things and we also try to fix everything, too. But, some things can not be fixed. That is why we have to be willing to advocate for patients to get the best care in their last days of life. We want to provide excellent pain and symptom mgt—all we can do to prevent suffering.

 Pam Malloy 

Sharon, yes, good articles in the August issue.

 Annette Castora 

Do you also refer to Hospice for palliative care even if patient is not in final stages?

 Pam Malloy 

I believe that all of us want to give excellent care to our patients. We all have seen those who we know are receiving futile care. They are going to go bankrupt because of care that will not benefit the patient. That is why we need to have conversations with docs and patient/families about benefits vs. burdens.

 sharon 

We do not. The Dr. I work with will not ever discuss hospice unless the pt. brings it up. Even then, Dr. is very reluctant to discuss Hospice.

 Pam Malloy 

Annette, great question. Hospice usually only takes patients who have been given approx. 6 months or less to live. So, for patients with a longer life trajectory, they would certainly benefit from pc. Many times, the care gets blurred between hospice and pc.

 JillRN25 

Many docs don't understand palliative care.

 Pam Malloy 

Sharon, why do you think your physician colleague is relunctant to discuss hospice—this is not uncommon?

 JillRN25 

they think it is hospice care

 Annette Castora 

Not so. Our hospice will admit patients who need palliative care and are not 6 months from demise.

 Pam Malloy 

Jill, you are correct. Many docs don't understand pc (neither do nurses)....so if we don't get it, how can we think our patients understand what it is.

 sharon 

We are told that PC can be given while on hospice but I never see a pt. receive PC radiation therapy while on hospice.

 Pam Malloy 

Sure, hospices provide pc.

 JillRN25 

the problem is that docs wait to start PC when the pt is already hospice care

 Pam Malloy 

Sharon, it depends on the hospice. Some hospices will provide palliative XRT if they think it will provide better qol for the patient. A great example is a person with esophageal cancer. We see many who receive pc XRT in this population.

 Annette Castora 

Hospice has spread out what patients can receive they even get dialysis

 sharon 

I can see that there are many misunderstandings between PC and hospice.

 Pam Malloy 

Again, the purpose for providing palliative XRT is not to prolong life, but to assist with symptom control and improve quality of life.

 JillRN25 

That is the major issue in my hospital as we start our PC program

 JillRN25 

Who has a PC program??

 Annette Castora 

Too many docs consider Hospice a last resort. Patients do get discharged from Hospice .whether they are at home or in a care facility

 Pam Malloy 

Palliative care can be provided anywhere during the continuum of care. It can begin at the time of diagnosis. Think about that patient diagnosed with stage IV lung cancer or maybe pancreatic/liver. We know the trajectory of these diseases—usually 1 year. So, at the time of diagnosis, in the perfect world, a patient would also be referred to the pc team to assist with symptom/pain control and also provide grief interventions. So, the patient could certainly benefit from 12 months of pc. Let's say the patient is elderly and his wife can no longer take care of him at home—this is determined 3 weeks before he actually dies. So, he is transferred to an in-patient hospice and cared for there until he dies. HOWEVER, ideally, the patient would get into hospice earlier, so that the family and patient could really benefit from all the services that hospice can provide.

 JillRN25 

T`he problem is that patients and their family do not know about PC

 Pam Malloy 

Yes, remember, we all live in a death-denying society. No one wants to talk about death. Many of us have taken care of our oncology patients for years—first met them when they were diagnosed 7 years ago and now they are back with a reoccurrence. So, you know them well. You have seen them come in and out of the clinic and hospital. No one wants to "give up on them." So, it's hard to think about them dying and not giving them any further hope...however

 leahma 

I understand PC, it is just the fact the interdisc. Team does not exist for me so how do I provide all that I can?!

 JillRN25 

the MD never explains it or tells them the benefit of the program

 leahma 

We explain it

 JillRN25 

Very few do...

 Annette Castora 

I work in Case Management and have referred patients for palliative care while it still benefits them enjoy a greater qol. So if patients don't know, approach the subject and give them the opportunity to learn. Isn't that part of our nursing duty?

 Pam Malloy 

PC provides hope in paying attention to suffering. It encourages reminiscing and families talking. There can be much angst at the end of life. But, if people speak opening about it, it allows people to say, "I love you," I forgive you," "I will miss you," etc.

 JillRN25 

I approach it as a quality of life subject instead of the subject of death and dying

 sharon 

I have always felt that something has been missing in our care of the cancer pt. and I believe that Palliative care is the missing something. We do get the pt. what he/she needs but in such a stressful long drawn out process many times. Making so many phone calls to different doctors and offices. I can see we need a PC team here.

 Annette Castora 

Now you got it.

 Pam Malloy 

Leahma, you are in a difficult position here. You have lots on you. I would encourage you to become a member of HPNA (hospice palliative nurses assoc) and you can get some education and support from your local chapter. You need to take care of yourself, too. This work is too hard without excellent self-care. Also, can you partner with any of your in-patient colleagues?

 JillRN25 

We are working on a PC team at my hospital... not an easy sell

 Annette Castora 

Need to get more proactive. Remember who

 JillRN25 

it is always a money issue

 leahma 

I am going to be working on that!

 sharon 

My small rural hospital tries to be very progressive; I think we can do this.

 Annette Castora 

Is the most important person. It's the patient. Sorry I broke off there.

 leahma 

thanks so much for your time Pam.

 Pam Malloy 

Sure, palliative care is difficult to sell. Over the years, I see medical directors, who were once so opposed to pc teams, have a crisis in his own life and see an actual pc team at work and come back to our institution and say, "I want what I just saw given to my loved one."

 JillRN25 

Well it looks like we are finally going to get it to work this time... I am very excited about it.

 Pam Malloy 

Annette, it starts with someone who has a vision for this work. Rural hospitals are a great place to start.

 Pam Malloy 

Jill, are you talking about creating a pc program at your institution? If so, what can you say was the biggest help in getting this to happen where you work?

 JillRN25 

We went to the CAPC program... plus I have some really dedicated physicians who want PC... they are pushing for it

 Pam Malloy 

Even, though patients feel like there is no further treatment available, and many times they feel abandoned, there is so much more we can do to improve their quality of life. Excellent communication skills are vital for this care. Actually, excellent listening skills and being present are much more important.

 sharon 

What is a CAPC program?

 JillRN25 

All the higher up hear is that in decreases time in the units and cuts cost... I hear improved quality of life.

 Pam Malloy 

Jill, you are fortunate. The CAPC program is wonderful.

 Pam Malloy 

Well, the "higher ups" have to make sure they don't lose money (so we can all stay employed). So, it's wonderful that you can show data that it improves quality of life.

 JillRN25 

Sharon Google CAPC... it is a wonderful palliative care resource

 sharon 

Great, I will do that. I know we need this in my area.

 JillRN25 

Center to advanced palliative care is the name of the program

 Pam Malloy 

Sharon, CAPC is a wonderful project and they provide courses that you can come to and learn more about palliative care. You have to bring your administrator so they everyone learns about costs, etc. It is an interdisciplinary event and would be beneficial for you to check out if interested.

 Pam Malloy 

www.capc.org is the website for CAPC

 JillRN25 

that is exactly what I did

 Pam Malloy 

Jill, also, you might want to consider attending an ELNEC course. It would give you a wonderful opportunity to network with others who have a pc program, as well as those who are just beginning the work. www.aacn.nche.edu/ELNEC

 sharon 

Thanks for the info.

 Pam Malloy 

You are very welcome.

 Pam Malloy 

One last thing I would like to say is....

 JillRN25 

thanks

 Annette Castora 

I have attended ELNEC and am proceeding to become certified as a trainer so it's a good thing. Thanks Pam.

 Pam Malloy 

Be good to yourselves. This work is important. We all, from time-to-time, experience moral distress. We have to take good care of ourselves so we continue this work. Do you all do this?

 Pam Malloy 

Great, Annette. So happy to hear this.

 JillRN25 

Our staff here is amazing... so supportive of each other.

 Annette Castora 

I do by seeing the look on patient's faces when they don't feel deserted and distressed by all the "we have another treatment" which only makes them sicker and their family more distressed.

 Pam Malloy 

I always use the analogy of getting on an airplane and the flight attendants say that if we lose cabin pressure, the o2 masks will drop down. We need to place the mask on ourselves before helping others. That is exactly what we need to do in order to take care of our patients and colleagues. Take good care of yourself, so you can help others.

 sharon 

Yes, I believe in taking care of myself, it's the only way to care for others. I take all my time off and nurture my spiritual self.

 Pam Malloy 

Yes—care for all aspects—physio, psycho, social, spiritually. Excellent reminder!

 JillRN25 

Good luck everyone with your PC...

 Pam Malloy 

Please feel free to e-mail me if you have any further questions. I have really enjoyed this chat with all of you. pmalloy@aacn.nche.edu

 Laurl at ONS 

Thank you all for a wonderful discussion! Please tell your colleagues that there is one more chat on this topic, tomorrow at 10am Eastern time - please join us again, or tell a friend. Thank you Pam for your expertise!

 sharon 

Thanks to all!

 Annette Castora 

Thanks for the forum to share.

 Laurl at ONS 

I think this about wraps up our time today - thank you all for a great chat!

 Pam Malloy 

Thanks everybody. Best wishes to you! Take good care.

 Laurl at ONS 

Have a great afternoon!