Palliative Care Issues

 Laurl at ONS 

Welcome to today's hot topic chat - the final in the series on palliative care. Our expert is Pam Malloy. Welcome all!

 Pam Malloy 

Hi! I'm just wondering from you all are from?

 erachrn 

Thanks! I am from Springfield IL

 amyt57 

I'm from South Bend IN

 Pam Malloy 

Oh, good, we have some great Mid-Westerners here!

 erachrn 

:)

 Pam Malloy 

Do any of you currently work in palliative care?

 erachrn 

I am a Hospice Home Care Nurse so have palliative care issues on a daily basis

 amyt57 

I am an oncology nurse navigator and also work at two Hospice House facilities

 NJP 

I'm from Blacksburg Va, , Work at local community hospital and see chemo pt and then get a lot at end of life

 Pam Malloy 

Good, we have a wealth of great experience here.

 Pam Malloy 

Hey, Blacksburg! My daughter is a grad of VT!!! Go Hokies!!!

 Pam Malloy 

Well, this is wonderful; we will have some good discussion.

 Pam Malloy 

Is there anything in particular you want to start with?

 NJP 

We set up Hospice rooms and sometimes the Hospice nurses will take over but we give palliative care most of the time

 NJP 

no real program set up though so I am looking for some ideas to take back to the nursing staff- not just our chemo nurses

 Pam Malloy 

So is everyone pretty clear about the difference between hospice and palliative care?

 Pam Malloy 

Or, are they the same, basically?

 erachrn 

My understanding of Palliative care is that patient's are still seeking treatment i.e. chemo or radiation prior to Hospice and they are not ready for a true Hospice where they are seeking no additional treatment.

 Pam Malloy 

Very good.

 amyt57 

In my mind, they are basically the same and Hospice just does it so well when extra help in needed for patients at end of life and no further treatments are given

 Pam Malloy 

If you can picture a diagram of patients getting active treatment and at the same time receiving palliative care for symptom and pain control, grief services, etc.

 Pam Malloy 

Ideally, we would want patients to begin palliative care at the time of diagnosis.

 Pam Malloy 

Which of your patients would best benefit from palliative care at the time of diagnosis?

 NJP 

At my facility it's a mix. Some are still seeking treatment but more for quality of rather then cure. Others are at end of life but don't want hospice in the home or hospice in the hospital just comfort care until the end arrives

 amyt57 

Pancreas cancer, metastatic cancers etc, that need symptom management to improve QOL

 erachrn 

My patient's are in hospice right now, but patients with bone mets, patients with nausea related to liver issues.

 Pam Malloy 

Yes, we have all seen patients like this. Certainly the cancers with a short trajectory of time (i.e. lung, pancreatic, liver) benefit so well, because we have a good understanding and know what will probably happen in 9-15 months after diagnosis.

 Pam Malloy 

It's all about making sure the patient has been informed of their choices. Conversations regarding benefits vs. burdens regarding treatments.

 NJP 

I think many of my patient's that get diagnosed at more advanced stages could benefit from it at time of diagnosis

 Pam Malloy 

One other thought, too...think about some of your elderly patients, who may just have a stage 1 or 2 cancer, but they have other comorobidities that may cause their deaths, such as COPD, HTN, history of heart disease, diabetes, etc. These elderly patients may have few resources and support. They may live alone, etc.

 Pam Malloy 

Sure, NJP, the best time to begin palliative care is at the time of diagnoses, especially for those advanced stages. Not only can the patient benefit from pc services, but the family, as well.

 NJP 

I work on a Progressive Care Unit , so besides our oncology patients we see lots of COPD, Cardiac , even Dialysis pt who all can benefit

 joanne 

In the process of trying to get approval to start a palliative care team. So I am here to learn anything you have to offer.

 Pam Malloy 

Yes, and we sometimes think that pc is only for cancer and HIV/AIDS patients.

 Pam Malloy 

Joanne, welcome. So, where are you in the process of trying to get approval to start a pc team?

 NJP 

In our area I think there is a lack of knowledge about the benefits of palliative care

 Pam Malloy 

Also, Joanne, there is some good info from the 3 previous chats we have had. So, you might want to check out those transcripts.

 Laurl at ONS 

Joanne, so great to hear of your plan. Please join in today, but also be sure to check out the last three transcripts (two are posted; one to be posted today) on this topic which will provide a wealth of info also...

 joanne 

I am going to the capa seminar in Atlanta

 Pam Malloy 

NJP, Yes, I you have hit a great point. Many in healthcare professionals don't know about pc and/or do not understand what it is. We live in a death-denying society and no one wants to talk about death. So, if hc (healthcare professionals) are talking to terminally ill patients about it and if they don't understand what pc really is, then it's easy to understand how so many people can be confused or just not know about pc.

 Pam Malloy 

Joanne, is that the CAPC seminar?

 joanne 

We have formed a palliative care planning committee-six months ago-I have visited 4 local programs

 joanne 

YES

 erachrn 

We also have a pc team at the hospital where I work where MDs can ask for a pc consult for pain management and symptom control

 Pam Malloy 

Joanne, it's great to do some visits to other facilities and look at "lessons learned." Going to CAPC will be a huge benefit to you and your colleagues, as well. You will have opportunities to look at budgets, etc. It's more interdisciplinary and the real take home message about pc is that we have to include all disciplines. It's a win-win for us, but most of all, it is a win-win for our patients.

 Pam Malloy 

It's wonderful that you have a pc team at your hospital and that your physicians call on them.

 Pam Malloy 

Are your nurses trained to know which patients could benefit from pc?

 Pam Malloy 

I mentioned earlier about the Center to Advance Palliative Care (CAPC). For more info on this wonderful organization, go to: www.capc.org

 erachrn 

The doctor has done a good job at making himself known and that it is available.

 Pam Malloy 

So much of pc is marketing it...making sure the staff is aware of their services.

 joanne 

We plan on doing an education blitz before we get started to reach out to nurses, docs, med students, residents, case management and others that would be involved in pt care

 Pam Malloy 

Joanne, do you have a plan for how you will educate the staff?

 NJP 

About 3 years ago we had a physician that our doctors could consult and she was working with the nursing staff to educate us but then she left. Some kind of conflict with working for 2 competing healthcare systems or something

 NJP 

We really miss that resource, although some of the doctors had a real problem consulting her

 NJP 

I will have to check out the CAPC site for information. It may help us get back on track

 Pam Malloy 

I think it is difficult for physicians to sometimes turn certain things over to other physicians. We all are like that in some way. We want to have control (not in a bad way), but we think we can do it all. I know I have been guilty of that, just a couple of times! :)

 joanne 

At this point we plan, but we have not been given etc the official go ahead, to attend grand rounds-medical and surgical-and by doing inservices for nurses

 Pam Malloy 

If you are looking for educational resources, I would certainly recommend sending someone (interested in educating others about pc) to an End-of-Life Nursing Education Consortium (ELNEC) train-the-trainer course. For more info, go to: www.aacn.nche.edu/ELNEC

 NJP 

As part of the education team for my unit I can bring information in even if we can't have an official PC team

 Pam Malloy 

You know, we can't practice what we don't know. Education is key!!

 Pam Malloy 

NJP, the ELNEC course would provide you with all kinds of materials to educate your staff. You could do little 15 minute up-dates at the bedside, have a brown-bag lunch and review case studies, do a 1-2 day course. It's all very flexible and intended to meet the needs of your staff.

 erachrn 

Anyone have any ideas for managing secretions and cough in lung ca. I have tried Guaffenisen, albuterol, and scope, and atropine??

 Pam Malloy 

Also, there is a great website you might want to check-out—CANCER Palliative Education Network (CANCER-PEN) at http://ecampus.stanford.edu

 joanne 

We have already been talking it up and have 4 docs on our committee and are getting positive responses... I took the ELNEC basic course years ago

 Pam Malloy 

Great Joanne, it's good that you have 4 docs on your committee.

 Pam Malloy 

Regarding the secretion questions, does anyone have any ideas on this?

 Pam Malloy 

There are many things to assess with secretions—is the pt trached? Guafenesin 200-400 mg po q4h prn + increasing fluid intake can be helpful, especially when they are thick secretions

 erachrn 

Thanks I can try the increase fluid. That's a good option

 Pam Malloy 

If the secretions are disturbing to pt/family, you could try a trial of scopolamine patch q72 hour and scopolamine 0.4 mg IV/SC immediately and then q4h prn

 Pam Malloy 

If no relief from scop, then you could add a second scop patch 1 72 hours or increase the scop to 0.6 mg IV/SQ q4 hours.

 erachrn 

Thanks.

 Pam Malloy 

Also, I would like to make you all aware of another good resource for education. The Hospice Education Network (HEN) has courses on-line. Staff can view lectures 24/7. It is a wonderful site. Just Google Hospice Education Network and you can get more info.

 NJP 

We have had some luck with the scop patch and the atropine prn

 erachrn 

Atropine seems to work faster, but I have had patient's complain of the taste.

 Pam Malloy 

I know getting time for staff education is difficult. We are short staffed and finances are so limited. So we have to be creative in educating folks.

 Pam Malloy 

All of you seem to be in very high-stress related jobs. Lots of responsibility and lots of very sick people you are caring for. Just wondering if you find it challenging to take time to care for yourself?

 erachrn 

Have found creative ways to help patient's absorb Fentanyl patches—making sure that
they are placed where there is enough subq tissue to absorb medication (gluteal, abdomen etc)

 joanne 

Stress is at an all time high-under staffed so often I am really feeling frustrated and feeling the frustration of other staff members when we just don't have the time to spend with the patients!!

 Pam Malloy 

I don't know about you, but I have to really work at keeping "boundaries."

 Pam Malloy 

Joanne, yes, and when we are stressed we know our patients/families feel that, too. It's difficult to have so much on us and to be over-loaded. It's not what we went into nursing for—we wanted to help. Sometimes, when we are understaffed, etc. we may feel that we are doing more harm than good.

 NJP 

Same here and staffing get shorter when census is down. Admin just doesn't always consider pt acuity

 Pam Malloy 

Sure. So, how can we thrive in environments like this? How can we make sure that our patients still receive excellent care?

 joanne 

Absolutely! Quicker turnover, more paperwork, increased acuity Less staff just doesn't make sense!

 erachrn 

Boundaries can be hard even when co workers call you on days off to ask questions regarding your patient's and symptom management. Even after staff education you can still get called and you want to make sure patients receive the care and medication that they need.

 NJP 

I work night shift and there is a misunderstanding that patients do nothing but sleep so we don't need the same staffing. Makes for very stressful attitudes.

 erachrn 

Yes I so remember working night shift and that happening

 amyt57 

I'm a workaholic and put in about 90 hours a week but with two sons in college I need to work and I love it. I feel that I make a difference in these patients’ quality of life or end of life and I thrive on that duty.

 Pam Malloy 

Yes, I think any of us who worked nights understand the "privilege" to have those late night chats with patients who are afraid, who need further information/clarification. But, somehow, that never got into the acuity.

 erachrn 

I understand that "duty" That is why I moved from inpatient oncology to hospice home care.

 Pam Malloy 

My concern, too, is with younger/newer nurses coming into the profession. With things being so hectic and being understaffed, it's hard to get a good orientation. Also, they watch us and see the stress. Mentorship is so important. We have to take care of these younger nurses. There's too much work out there to do.

 NJP 

I get satisfaction from that as well but often feel we are cheating our patients of valuable time to just talk or listen to them. On nights you only have a few hours to pass meds before the patients want to try to get some sleep and when you have five and six you end up with shorter time to just talk and see what they really need- emotional support

 joanne 

And when you see that the patients need the time for quiet talks but you keep getting interrupted or have trouble finding the time at all you can feel disappointment. This is not a good time for new nurses you are so correct Pam

 NJP 

Plus we are seeing lots of young nurses who got into nursing because they thought they were going to make great money and really weren't ready for the load, stress, and lower salaries in our area

 Pam Malloy 

But, we need to make it a good time, somehow. We need to be role models. We need to be honest with them and say there "are good days and bad days." We need role model good practice, even though it gets hectic. Everything should be focused on providing excellent care for the patient.

 joanne 

I am a preceptor and I really make an effort to keep in touch with the new nurse when he/she finishes orientation. To let them know I am available and that seems to be helpful to them

 Pam Malloy 

One of the things I think of frequently is that when a patient is near death, to be invited by the family to spend those last few moments with them is really precious. Family members will remember the last minutes/hours of their loved ones life forever. We only get one chance to do that well. It is a privilege!

 NJP 

We have tried to similar on my unit. we have a really good team on nights and try to help each other, especially the new nurses

 Pam Malloy 

Joanne, it's wonderful that you stay in touch with those you precepted after they have completed orientation. I'm sure that means so much to them. You are seen as a role model. You care. By caring for our nursing colleagues, we in turn encourage them to provide excellent care to our most vulnerable population.

 joanne 

Yes, entering that sacred space with pts and their families is an honor and changes you forever

 erachrn 

That is a very sacred moment as people pass from death to life and it is even an honor to be with them in their home as you wait for the funeral home to come after a death has occured.

 Pam Malloy 

I was reading something the other day, where a pc physician takes his shoes off before entering the room of someone who is actively dying. He believes there is such sacred work going on there that he needs to enter the room respectfully, without his shoes on.

 erachrn 

What a statement!!

 Pam Malloy 

Erachrn, yes, to spend that extra time in the home is such a gift to a bereaved family. That is an honor!

 Pam Malloy 

I think when we feel so much moral distress—not always agreeing with patients decisions to continue futile care and we see the patient suffering so + families going bankrupt for all this treatment, it causes much disdain.

 Pam Malloy 

So, what we have to do is to re-center ourself. Think back to what brought us here in the first place.

 NJP 

In the hospital we often see families that can't be there - for their own reasons and try to call them back in with enough time if we see tell tale changes but some can't bring themselves to watch but don't want their loved ones to die alone so we do our best to be with them at the end

 joanne 

Some days that is hard to do!!

 erachrn 

The special memories that can happen are very meaningful. I have had numerous children and mom's and dad's change clothes, I have taken family pictures before the death, etc

 Pam Malloy 

Dr. Michael Kearnery, et al just published an article in JAMA a couple of months ago about moral distress. He said that when he enters a patient's room and washes his hands, he looks at his hands carefully and sees how they can be used for such good—to decrease suffering, to touch someone who is so broken, etc. So, celebrating our hands and the good they can bring is so wonderful!

 NJP 

It often gives the families some peace to know they weren't alone

 joanne 

not being with them in the end—I mean it is hard to think back t

 Pam Malloy 

We just have to support families in what they can and can't do.

 joanne 

...why we became nurses when the work is often underappreciated

 Pam Malloy 

For most, they have never been on that road before and they don't know how to respond. They are frightened.

 Pam Malloy 

Oh, I think our work is very much appreciated. It may not be articulated at certain times, but think of what would happen if there were no nurses...just talk to someone who was cared for by a nurse recently. They will be appreciative of the advocate they had in a nurse. Again, we have to role-model this care.

 NJP 

And that's what we try to do because we don't know all the family dynamics and situations. So as a team if we know someone is in that position we are all good about watching each others patients so the primary nurse can be there if necessary

 Laurl at ONS 

This has been a terrific chat - what meaningful work you all do! -thank you all for your contributions. Before we end, I want to ask if you'd take time at the end of the chat to cut and paste this URL into a browser window and take our brief survey - we'd love to hear what you think of the chats, and offer chat ideas for the future. The URL is http://research.zarca.com/k/RsTUTRsTVWsQVTQTVsPsP - thank you!

 joanne 

Families often need permission to feel their feelings

 Laurl at ONS 

I'm sorry that our chat is over...thank you for all of your contributions. Pam, thank you so much for your expertise! Have a good day, all.

 Pam Malloy 

Joanne, that is correct and we need to give those families permission.

 NJP 

So true. Thanks everyone for some great info

 erachrn 

Thanks

 Pam Malloy 

Thanks everyone. This was great!

 Pam Malloy 

Best wishes to all of you. Keep advocating for your patients!!!