Palliative Care Issues

Welcome to today's Hot Topic Chat! Today's Speaker is Pam Malloy, who will be talking to us about palliative care. Welcome Pam!

Good morning everyone! Welcome.

I'm looking forward to spending this hour with you. Where are you all from?

I'm from Malta

WOW! Welcome Svella from Malta!

Do you have palliative care in Malta?

Please let us know where you are from - we have one person here from Malta...where else?

Last 2 decades but we are opening a new ward soon

This Sandra Lee Schafer from Pittsburgh, Pennsylvania

Marna from Coeur d'Alene, Idaho

I am Beena, I am from OSU,Columbus,Ohio.

I have recently reviewed the Palliative Care Guidelines for Critical care published in 2006 and there are 18 specific suggestions. I feel like some important palliative care issues are missing. Do you know how these have been readdressed perhaps by other organizations?

Welcome everyone! So great to see so many people from different parts of the world.

Oops sorry- so busy writing my question- Brenda from Baltimore

Good question about the critical care guidelines. Perhaps AACN (critical care) is doing some up-dating? I'm not really sure at this point.

Certainly, palliative care in the critical care areas is so important. Many people die in ICU's and that is the last place they wanted to die—hooked up to machines, tubes, etc. Do you have a specific concern about this?

What was distressing to me and colleagues was that the only symptoms addressed were pain, respiratory distress and sedation. Are there other guidelines you may recommend for us to look at when designing our audit?

Our system is based on the UK, we are trying to adopt the Liverpool care pathway but I would like to know if there is a pathway used in the US.

Have you seen the new 2009 National Consensus Project, Clinical Practice Guidelines for Quality PC (palliative care)?

Thanks. I may have seen previously, but will search it out.

The UK has a wonderful system and as with other countries, we all are working together to provide the best care possible. Palliative care is a young specialty. We need lots of research in palliative care and it is wonderful for me to see how people are collaborating internationally to do this.

Pam, what issues do you see coming up with in regard to intensive care units? How do you approach critical care nurses about pc?

Again, an excellent question about critical care. Nurses, no matter where they work, need to be educated about what palliative care is all about. We can not practice what we do not know. Nurses need to collaborate with physicians, and other members of the team to look at suffering, futile care, etc.

How many of you have nurses in the role to help with education and transition to home or hospice?

I am worried that when critically ill patients are deemed comfort care that we may not turn them as often, perhaps do less mouth care, not address possible constipation, etc. There is a growing number of critical care nurses interested in this topic, but still slow. The pathway idea in Liverpool sounds nice. Could you explain a bit more?

Back to critical care, many times, patients have not prepared for this illness, this accident. There are no advance directives, etc. So, when someone has a major trauma or illness and suddenly lands in the ICU, no one, including the medical/nursing team has an idea as to what this patient's wishes are/were. It's always difficult for families to make decisions regarding life-sustaining treatments, etc. when many times the prognosis is so poor. Critical care nurses have done amazing things over the past few years in promoting palliative care. It's all about communication!! Right?

I agree, however, the education and support is not always available to assist these nurses.

I think I may have the wrong definition of palliative care....since I joined a few minutes late, was that discussed initially?

Regarding nurses in the role of transitioning folks into palliative care, it certainly varies. Many facilities have a palliative care team, lead by APN's with a medical director. Other places are staffed with an oncology nurse who makes referrals prn.

We at the out pt chemo unit do a lot of teaching and I agree we need to collaborate with other team members to educate nurses and pts.

Someone asked about the definition of palliative care....The goal of pc is to prevent and relieve suffering and to support the best possible quality of life for patients and their families. Palliative care can begin at any stage of the disease and can be provided even though the patient is receiving active treatment for the disease.

Yes, we would love to hear more about the Liverpool pathway. Svella, can you tell us more?

Our Docs order Hospice when they've discussed this with the family, which as stated above pt's can continue with tx, whatever keeps them comfortable.

Thank you Pam for adding that they may be receiving active treatment. That has been a huge discussion throughout my career.

Pam, can you talk a little about the difference between Hospice and Palliative care (pc?)

It is challenging to differentiate between hospice and palliative care. I am in the process of revising our order set to reflect that difference.

Yes, being able to continue with active treatment on palliative care is so positive. Remember that hospice is usually provided knowing that the patient has 6 months or less to live. However, we are not that sophisticated in prognostication, so we get that wrong sometimes. How often has we had discussions with our colleagues and they think they have longer to live then what they actually do.

So, sometimes, having a conversation with our oncologist colleagues and asking the question, "Do you think Mr. Jones will still be here 6 months from now?" This is a great non-threatening way to begin a conversation with our colleagues about transitioning them to hospice.

Palliative care can be framed the same way, using PC as a bridge before hospice, then, right?

Of course, in the best of worlds, all of our cancer patients would have palliative care delivered beginning at the time of diagnosis. Think of those patients with lung, pancreatic, liver cancer—we know their trajectory. Yet, many times, their symptoms are poorly managed. They are having anticipatory grief. Their family is distraught. Palliative care can assist to meet the needs of not only physical, but also social, psychological, and spiritual needs.

I should qualify-PC early is always good, but when resistance is met, it could be framed to help shift focus to symptom management priority?

Palliative care is INTERDISCIPLINARY and this is wonderful.

Yes, symptom management is a great way to shift.

The LCP ( Liverpool pathway)  is based mostly on the last week or days of life and it’s a kind of check list symptom control- mouth care, pain control, respiratory distress etc...

Can palliative care be incorporated in the discharge planning, so the family also can be educated?

Palliative care providers are specially trained in symptom management. Not just physical symptoms, but also emotional and spiritual. Suffering can certainly occur in those domains as well.

Absolutely, pc can be incorporated in the discharge planning so the family can be educated. That's the best way to do it. Many of these patients are going home and it is their family members who will be taking over the care. They need support. Palliative care can offer bereavement support before and after the death. Chaplain services are also available. And of course, pain, dyspnea, n/v, etc. can also be managed.

I have had training at Gunderson Lutheran for Respecting Choices. Interesting to see that they have become part of the debate on EOL ( End of Life) care in the political realm. Have you at ELNEC had any press inquiries? How do you frame?

First of all, Gunderson Lutheran is a wonderful place and you have many folks there who are doing great work in palliative care. Regarding the political debate, it is a hot topic. But, if you think about it, palliative are could be a real answer to the healthcare needs of our country. People being identified early who could benefit from pc. Their symptoms managed by those specialized in doing so. Bereavement services offered, etc.

So you who have PC in your hosp- you do not use Hospice? Because as I'm reading the Q&A, I'm not seeing a big difference between the 2.

Hospice is provided when it has been deemed that a patient has 6 months or less to live. Patients can not continue with life-saving treatments.

Steph 199 - I agree. As I am reading, I am questioning what I thought about this topic.

We merged our pain team and palliative care team and they address symptoms, not preparing for EOL. Maybe I am not stating their thoughts, but it is how I as a referring nurse think about it.

Palliative care can begin at the time of diagnosis—the best time. So, people may have palliative care for 3-5 years before they die. For example, your stage 2 breast cancer patient may not have a life-threatening tumor, but if she has CHF, diabetes, etc. her co-morbidities could cause major problems down the road. This would be a perfect candidate for palliative care.

Brenda, I think Diane Meier MD says that in a perfect world, we get the palliative care consult along with the first treatment consult.

Yes, some folks have merged their pain and pc teams. Again, if their goal is to see patients and help to prevent and relieve suffering and provide care to the families, that's great!

In a nut shell, pc is not "timed", we can use ,teach..pc any time .

Yes, in that perfect world, you would do that. There is an oncologist in my community who sees the patient at diagnosis and sends them to see the pc team before they go home. That's a wonderful, compassionate way to do it!

Yea- I have been trying to get PC consult simultaneous to critical care and even get push back although approx 75% die due to that specific critical illness episode. May also be a component of my tertiary cancer research center.

The key is to get them on board from the beginning—but, at my facility, we find oncology among the "worst" to get PC consults!

Brenda, what is so amazing about people dying in the ICU is that so many families go bankrupt, paying for futile care.

That’s the way it should be, physicians should refer their pts to pc team before the pt gets to the point of hospice candidate.

Hi Pam, how do you get the buy in from the oncologists to talk about pc during initial consult?

I think the pushback issue is huge: legal concerns, family squabbles as they are not all on the same page; cultural issues; turf battles—-we are not done treating and trying many options, esp. in tert care centers where there is a lot of research

Remember, too, that patients have to make this decision for themselves. Many people don't know what palliative care is and if they do, they think it is associated with "hospice." So we have lots of education to do with patients and their families and actually teach people before they get sick.

This is pervasive across all specialty areas. Even worse than oncology is transplant. They should be on board from day 1—what if they don't get the organ or things go bad after?...these topics are never discussed—just all happily ever after stuff. We are a huge transplant center and not everyone is happily ever after. Oncology should be leading the way—not dragging their feet in my opinion!

And it is hard to articulate something we are (as a profession, not us individually) clear about.

If you can find a "champion" MD you can move forward more quickly with other physicians and hospital administration. It is just finding that champion.

Yes, the Champion—something I haven't been able to find yet. But am still working on it.. have some possibilities..

Difficult question about getting oncologists to buy in to pc. In my own experience working with oncologists, they have to hear about this from their own colleagues and or other patients. For example, a patient may say, "no more chemo—I'm done. I'm tired." So they seek hospice/pc. After the patient dies, the family contacts the oncologist to say that the death was peaceful and they were so grateful to the hospice/pc team. They hear this over and over and begin to think maybe this is not such a bad idea. Plus, as oncology nurses, you can have those conversations with your oncologist colleagues. You both want what is best for this patient. You do not want your terminally ill patient suffering needlessly. Start with where you both agree—advocating for the best care of your patient. Keep those conversations patient-centered.

I'm finding some of the most verbal nurses supporting and eager to expand their knowledge and PC practice are the ones in critical care. Especially when you get to aggressive teaching hospitals, you see so much futile care (and often more opinionated nurses). They know something is not right but just not sure what or what to do about it. PC is a lifeline for them when they start learning about it. Our critical care nurses have been some of our most vocal patient advocates!

We identified one in Spokane and now she has taken the lead and left her general practice to lead the program. We are thrilled for the patients, families, staff and community.

Yes, lots of champion physicians out there. Good for you in Spokane! Excellent!!

Ethics committees are other venues to speak for the cause. It is wise to have CCRN and Oncology represented. It opened many doors for our patients.

Yes, always keep your conversations patient-centered. It's not about you getting your way or the oncologist getting their way. We all want the same thing—providing the best quality of life for this patient. So, how do we get there?

Yes, always know that an ethics committee is at your disposal. You don't have to do this alone.

Oncologists: I wonder if part of the issue is that they think they already know all about PC because Oncology has been the first thought for most people when it comes to dying patients...but they don't have the education or tools any more then other MD's. There is also such a big thing about positivity. But being hopeful and positive doesn't mean false hope...

What about specific issues like terminal sedation or extubation? Anything new on those?

For those of you who find it difficult to talk about pc to your physician colleagues, get together month for journal club and/or review a case study of a patient you cared for in the last week who died. What went well? What went not so good? Lessons learned.

I should say palliative sedation.

Yes, I think our oncologists, as with oncology nurses—-we have opportunities to know many of our patients for years. It's hard to not want to fix everyone.

Where I work, we have approached this from a bedside nursing education position. Our PC is advocated by our bedside nurses. I think if we could get that Champion—we'd be flying right now!

In extreme cases, extubation, terminal sedation has been used. There are guidelines for that.

Decision to withdraw ventilator support is made on behalf of the patient by their families. This occurs typically when the prognosis is poor, the informed patient requests withdrawal and interventions to save the patient's life are deemed futile.

Extubation: Not much new. Not much evidence based research. No EBR agreement on the best way to do it. The key is good meds on board and emotional support and education for the family. We have new CMO orders (Comfort Measures Only) that give good orders for the MD's to choose to use which have started making a tremendous difference. The patients are more comfortable and peaceful, the nurses and MD's are less unsure and feel comfortable doing things that they don't feel that comfortable with since the PC Team wrote these. They feel like they are "OK"

Going back to the ICU, this is really a huge area that we need to concentrate education on. Each year, over half a million people in the US die in an ICU or immediately following treatment in an ICU. We have many critical care nurses who attend national ELNEC-Critical Care train-the-trainer programs and they are frustrated by the continuing suffering they see. Yet, many are making great strides. It does not happen overnight. You educate people one at a time.

Yes, many hospitals have developed comfort care order sets.

I find that most nurses have never heard of palliative sedation, at least if PC is not their area of expertise.

That's what I tell our nurses: baby steps. Each improvement is a victory. Each patient who had something "better" is a success. And I am seeing these successes daily. Nurses are awesome when they are educated. And ICU nurses are the least timid about standing up when they feel knowledgeable.

When doing terminal sedation, ventilator withdrawal, it is important that the staff be supported during this time. It is difficult.

Two different ways to do ventilator withdrawal; Immediate extubation and terminal weaning.

I believe the critical care organizations are in support, but there are no good prognostication systems and so many are still so "hopeful" that they will get the individual over the hump- not recognizing a new one will often appear. It must be a long, pressing process, but I believe the younger doctors are better incorporating this info. We do find the intensivists are sometimes better than the oncologists.

Palliative Sedation: Our CMO orders  cover this (which is a great help to the non-PC Team people) but I find it really a rare circumstance where this is required. Palliative Sedation is used when we just can not control the patient's suffering. Most of the time we can...but it's an important option to have and an important choice for our patients to have.

Yes, palliative sedation is used very infrequently—mostly for those, despite all efforts to control pain and other life-limiting symptoms, who continue to suffer immensely.

The young docs are coming out with a better idea about PC, but who is going to stand up to an important attending who sees PC as giving up? I think they feel some moral distress about this also but don't know what else to do except try to keep their distance (which the nurse can not and, therefore, has a deeper issue with moral distress).

I tell our nurses to keep working on the interns and residents. They will be the attendings of tomorrow (and may be caring for you or your loved ones) so you want to try to educate them...

My favorite way to perform terminal withdrawal of the ventilator is to 1) decrease vent settings to near normal air while increasing sedation to comfort, 2) add an anticholinergic to dry secretions and lessen rattle, 3) withdrawal vent with liberal orders for sedation. Everyone should know and expect to see tachypnea and some labored respiration as this is nature's method of trying to get rid of carbon dioxide. Some sedation helps but does not eliminate it. Also inform all that elevating carbon dioxide is like going to sleep so labored resp are mostly reflexive.

These issues are never easy. No one spends more time at the bedside or out in the home with patients than the nurse. We know these patients well—we spend time with them at 2 am when they are frightened. It can cause much moral distress, especially when we see suffering being promoted.

Brenda, you should write some kind of pocket guide for terminal withdrawal. It would be useful for ICU nurses and MD's who need a guideline and don't have one where they work!

In my spare time... seriously my cc grad student this semester is interested in ICU palliative care, so maybe more possible than I think.

Would be a great thing to have available as a download.

It took our PC Team over 3 years to get our CMO orders approved! If they had something out there that was already available and supported, they might have had an easier time...plus, with something that looked "official" from ONS, our nurses would have more sway in getting their MD's to use this as a guideline (could be a series on these difficult actions)?

It's important that as oncology nurses we take good care of ourselves. We need balance in our life. When we work, we work hard, when we play, we play hard. This work is too important and we need to care for ourselves, not only physically, but also psychologically, socially, and spiritually. What a privilege it is to be invited to take this journey with our patients and their families.

To ease symptoms without curing the Dx, that's Webster’s definition.....I'm trying to understand PC, this is new to me. So in your hospitals you have a team that deals with keeping the pt comfortable? Is this your way of preparing the families to accept the inevitable?

Pam, you know that we are doing a Palliative Care Cruise in October. One of our goals is to get people to laugh, breathe, relax, while still continuing to learn and to care...

We only get one chance to make a "good" death for a patient. We can't go back and try it again. Family members will always remember those last moments of their loved ones life. Again, it is a privilege to orchestrate a death, free of suffering.

We have a very small PC Team for an almost 1,000 bed hospital (MD,RN, NP, 1/2 Chaplain). But we have around 400 PCRN's (Palliative Care Resource Nurses) who have taken the full ELNEC Training and act as advocates at the bedside.

Steph, it takes time to prepare families for the inevitable. That's why it is important for a team to meet with the family and prepare them. A team, that the family feels comfortable with and trusts.

We have a few hundred ELNEC trained in a big setting. It takes time. They also need some assertiveness training.

Yes, Cyndi has done a great job in educating PCRN's. Again, education is so important! Plus, the role-modeling, so very, very important.

If you are interested in learning more about palliative care, go to the End-of-Life Nursing Education Consortium website (www.aacn.nche.edu/ELNEC)

Our challenge is to reach out to educate the public long before they get at death's door. As Oncology nurses, we have a mission to educate our patients in all things oncology—including if things don't go the way we wish they would. If we wait to have these conversations until they are dying in an ICU—we have not given them the opportunity to reach their own goals (or even explore what those are).

What a great discussion - thank you all for your participation! I hate to cut us off, but our time is up today. Please join us at the next hot topic chat on this topic, tomorrow night at 7:30 pm Eastern time. We hope you'll be there, and bring a co-worker!

Thanks everyone. Great time. Best wishes!

Thank you Pam!!

thanks!!

Thank you .

its been great and it seems that the important thing is good communication thanks

Thanks to you all! Have a great day.

You are welcome, Svella. I would love to send you an ELNEC-International CD. If you are interested, just e-mail me at pmalloy@aacn.nche.edu

Best wishes to you, Svella.

Thanks for ans. my questions, I've never heard of this PC as its own entity. This chat was not at all what I expected. But I've learned something new. Thanks again.

Thanks I will.