Palliative Care Issues

Welcome to today's hot topic chat - today's expert is Pam Malloy, ready to talk to you all about palliative care! Welcome Pam!

Hi everyone. Welcome. Where is everyone from?

Hi Pam. I am from Delaware

Debbie - from Cincinnati, OH

Maryland

Jackson, MS

This is great to have such good representation from across the US. Yesterday, we had someone from Malta.

WOW

Is there any place you would like to start?

Would you like to begin with a case study....maybe a patient you are caring for now who could benefit from hospice/palliative care?

Sounds good

What about a patient, stage 4 lung cancer, diagnosed 4 months ago. Lots of symptoms—pain, dyspnea, fatigue, anorexia.

Does this patient sound like a good candidate for palliative care?

Yes

What about hospice? Or what about palliative care? Is there a difference between these two?

How do you approach this patient about this subject if they don’t know they are terminal?

Excellent question about approaching patient if he does not know he is terminal.

Hospice does palliative care too. What are the patient's goals? Comfort or still wanting to try treatment?

First of all, we all know the trajectory for stage 4 lung cancer, right? Usually 6-12 months. Ideally, this patient would have begun palliative care at the time of their lung cancer diagnosis.

Is it our responsibility to inform this patient if they don’t know?

So, the palliative care team would be working with the oncologist to deal with pain, symptoms, and attending to psychosocial and spiritual needs of the patient and family.

Goals of palliative care—to prevent and relieve suffering and to support the best possible quality of life for the patients and families—regardless of the stage of the disease OR the need for other curative therapies.

Palliation can include active treatment to decrease tumor size.

How do you get the oncologist to refer to the palliative care team when the oncologist says "I provide palliative care"?

I agree with you cj if the patient understands that it is not a cure for their disease.

Hospice could be appropriate if the patient isn't in active treatment. Otherwise the palliative care team.

If a patient does not know they are terminal, you really need to talk with the oncologist and maybe ask something like, "Dr. Smith, do you believe that Mr. Jones will still be living 6 months from now?" Usually, in these cases, the oncologist will say, "probably not." In that case, it would be ethical to let the patient know they are terminal so they can prepare…say I love you, etc

Yes, we all know oncologists who think they can provide palliative care and many can. But, that is why we, as nurses, need to advocate for our patients when they may not be able to advocate for themselves. We must have open communication with our physician colleagues. When in really big trouble and you feel that there may be an ethical issue, contact the ethics committee.

I use the terms risk/benefits when speaking with the patient about the possible active treatment vs. hospice care only.

What if you are in an area where there is no palliative care team?

I find that docs often say the patient has been told the disease is terminal...We often have to remind the doctor that patients don't hear everything they've been told - it needs to be repeated.

Yes, there are many places that do not have palliative care in their facility. It has to start somewhere. In many cases, oncology nurses are considered the "Palliative Care Team." Many are certified in hospice and are passionate about this care.

We are just starting a consultative palliative care team. Does anyone have a process for automatic triggers for a referral to palliative care?

I think you would first need to know if the patient wanted to pursue any more treatment.

Talk with administration about the importance of palliative care. Patients in your community deserve to have their symptoms well managed.

Check the Center to Advance Palliative Care (CAPC) website for templates, etc. in getting started. www.capc.org.

I think that a trigger for palliative care could come from staging and grading of tumors.

You know all of these questions bring up an excellent point......it's all about communication.

I think the trigger would not want further treatment.

re: automatic triggers...we've informally used a screening tool from the CAPC website to alert physicians to patients who may be appropriate for palliative care. The docs didn't pay much attention to it, but it helped the nurses to identify those from whom they should ask for a palliative care consult.

Thanks, a good resource.

Also, all of these comments are excellent. Also, does the patient understand the benefits of palliative care? Does the patient understand the benefits/risks of further treatment? Is the treatment considered futile?

Patient education has to all encompassing from diagnosis, I believe.

As well as healthcare provider education to differentiate the diff between palliative care and hospice.

All avenues have to be left open.

What about patient and family education about hospice/palliative care? Many times we think our staff needs to be better educated in this care. BUT, I'm not sure that the average American is aware of what palliative care is and certainly has some confusion about hospice.

That is true. It needs to be presented right from the start so that patients know they will continue to be cared for even once they fail treatment or wish to stop.

I just read an article that recommended a palliative care referral at time of diagnosis with a terminal disease.

We have lots of work to do to educate the public.

re: the lung cancer patient...Since some of the newer antineoplastics, like Tarceva, are reasonably well tolerated, it is difficult to decide when to stop. These folks would benefit from hospice support earlier, but payment for Tarceva is an issue.

What about patients who are interested in clinical trials and are terminal but have a life expectancy of over 3 months but are terminal? Do you think that is a viable option and can you combine some trials with palliation?

Yes, reimbursement for Tarceva would not be covered by hospice, unless they could see that it was to be used for palliation.

This is where palliative care could come into play- provide symptom management, stay on Tarceva and when Tarceva not working already one step closer to transitioning to hospice.

We did this with many of our patients.

Is there a Cancer Care Coordinator in any of the hospitals to help the patients with finances?

We have a team of care managers with the cancer institute who help.

People always need to be informed. If a clinical trial is available for a patient, that info should be shared with them so they can make an informed consent. If a patient believes that his treatments are futile, then he has a right to refuse any further treatment. The key is to give patients options and let them choose. That's fair. That's ethical.

Miracle workers in finding funds.

Our hospital does and works at our Cancer Care Center. State of Delaware has fund available for the Cancer population.

It's true that patients need to be informed and we need to have options once treatments are no longer what they want.

Cost is always an issue. We do not want to bankrupt families in providing futile care.

Yes, and when no further curative treatments are available, there are many palliative treatments to assist with symptoms.

And they are very effective.

Going back to the clinical trial question—-yes, people can still receive palliative care and be enrolled in a clinical trial. (But, not hospice).

Many of our phase one patients were receiving clinical trial drugs and palliative care concurrently.

Has "hospice" care changed over the course of time? The current reimbursement model was put into effect . . . someone help me . . about 1983? Do we need a different model?

We spoke with the MD's that if they had palliative care, this might actually allow them to stay on clinical trial longer if symptoms remained under control.

I would certainly vote for a model that would have higher reimbursements to hospice for things like palliative radiation therapy.

I'm not sure we need a different model, but certainly looking at reimbursement issues would be good. Medicare pays for hospice. The Veteran's Administration also provides hospice care.

Since we are living longer w/wo cancer something is going to have to change..

This is all very interesting. Just wondering about how you all feel about the current national dialogue/discussion about palliative care and talking about "end-of-life" issues/preparation?

I do think the reimbursement model works fine for the majority of cases...and if the hospice has a big average daily census one patient getting palliative radiation therapy is not a big deal. But, smaller hospice programs can have a real problem if a patient needs radiation therapy

Yes, and remember that many of our cancer patients have other comorbidities (i.e. COPD, diabetes, HTN, etc).

I am very supportive of this. I hope it will prompt MD's to have the discussion about goals of the patient and help the patient understand their options .

Talking about radiation therapy....you have to look at quality of life for the patient, as well as the caregiver. Can the 86 yo (year old) wife drive her husband to the radiation clinic 30 miles away? Lots of different issues.

How many of you have had patients admitted with Advanced Directives—maybe they are 70, 80 yo?

The distortion of the provision to reimburse providers to have advance care planning discussions into "death panels" was crazy!

I think it is important to give hope to patients but also they must know that they will be cared for even when their options have run out. A discussion should be made at the start of any new illness to explain its normal course and options all along the way. And when treatment is no longer effective, it is important for the patients to know that they can find comfort and support as their status declines.

We do live in a death denying society and no one wants to talk about it.

They won’t even talk about this subject.

Speaking of radiation, there are new techniques like stereotactic radiation that can be delivered in larger doses over 1-3 treatments (rather than 25-35), or hypofractionation for bone pain so pts don't have to undergo 10 treatments for palliative bone pain control. That's what I mean about a different reimbursement model that would incorporate more palliative treatments for symptom control, including potentially oral chemo. Most of us know that patients are referred to late to hospice care.

We still see very few advanced directives.

Often times decisions are made about end of life care when a patient is really very sick and has only weeks left. Then there is a scramble to get hospice in.

I always wonder why more people don't have then, especially when they are admitted towards the end of their disease process. Shouldn't someone have talked about it by then.

Yes, ideally, patients would be referred to hospice months before they die. That way, their symptoms could be managed, the pt and their families would have bereavement support.

Again, this is where palliative care plays a huge role, getting the preparation done for when patient is transitioned to hospice.

T he benefits of palliative/hospice care are tremendous. Bereavement support lasts for 13 months after the patient has expired.

As to not have the crisis at end of life.

Yes, someone should have talked to them sooner. That's what I am saying, we live in a death-denying society—-no one wants to talk about the inevitable. So, that is why we have so many people dying in ICU on a ventilator and spending their last days there. All could have been prevented if advanced planning had taken place.

I think advance directive discussions scare the heck out of many physicians, so they don't ask about patient preferences until they absolute have to—usually too late.

The MD's need to put palliative in their vocabulary instead of curative all the time.

Interesting....how many of you have an advanced directive?

That is so true but we are all about fixing things and helping people to get better.

I think it is just the nature of medical care.

I do and all of my family members, paperwork was stocking stuffers at Christmas.

Referrals probably won't happen months before people die, I suspect, until we resolve the reimbursement model. Chemo options for most tumors are multiple, so oncologists are moving down from 1st line, to 2nd line, to even 3rd and 4th line.

Love it, Heather!!! That's great.

My advance directive has some pretty clear directives (down to what music I want played for me)...

Many options. Sometimes I get confused....imagine how confused our patients and their families are.

I have spoken with family members and would love to see it mandatory just like organ donation when you sign up for your driver's license, if not the whole directive at least a medical power of attorney appointed.

Maybe be wishful thinking, though.

Do you find yourself having trouble communicating with patients that you know are at the end of life?

Sounds like a great thing to write to your state representatives about Heather...

I have my AD's (advanced directive) done. Had a health scare which was my motivation.

One advantage to having my own advance directive is to be able to tell patients who think discussion of AD = imminent death, that AD are about planning

Yep, advance directives are the best gifts you can give to your family.

You are going to receive care whether you have an AD or not. However, in your helpless stage, if you have an AD, you are in control.

I have a living will and my husband knows I am an organ donor.

One the other side of this issue, I've had several people who thought they had a DNR ( do not resuscitate) because they had a living will.

That's so good to have those conversations with your family.

Yes, Debbie, many people think they have a DNR since they have a living will. Again, just another educational issue.

Also ensure with your patients that if they do not have advance directive but have at least appointed a MDPOA ( medical power of attorney)  that they have discussed with the MDPOA what their wishes are

Does your community offer programs on living wills, DNR, etc? Maybe AARP or your local hospice? In my community, the funeral director does it—sounds funny, but he's excellent!

The hardest part of any AD is the family.

I've worked with groups to do community programs on AD...our death denying society doesn't like to come. The few who did usually came because something was going on with a loved one that made the issue more immediate for them.

Yes, that's why we have to communicate well with the family (as nurses). As daughters, sons, moms, dads, we need to communicate our explicit wishes to our family.

My parents are in their 70's and still won’t talk to their doctor about an AD.

Yes, have you ever been to a party and someone asks you what you do? If you say "I work with Oncology patients," that freaks them out. Or if you say, "I work with hospice patients," they usually run to the bar! :)

Both have had cancer.

I'm back on getting people into hospice . . . I've heard so many say, after a loved one has died in hospice, that they wish they had gotten in sooner. Somehow, we have not been able to communicate effectively what kind of difference we can make for individuals and families. How could we do this better?

Yes, your parents and their lack of talking about an AD is way-too-common.

I get from people “how can you do that kind of work?”

I hear the same thing - that if they had only signed on to hospice sooner.

Palliative care is not just about controlling symptoms but the support the patient and the family - because it is not easy for the family - gets

Hopefully as generation have experience with hospice, the perspective will change.

We have a hospice hospital in our area and have sent and suggested this place with great success.

Need to get the providers to refer sooner- if hospice could have close working relationship with them, but sometimes that's hard.

Getting people into hospice sooner—always a challenge. This is where we need to have the conversations with our physician colleagues. Have a hospice nurse to visit the patient for just a "chat." Sometimes, just having hospice services explained can be freeing for people. Especially with young people who may be trying to raise a family and the father is terminally ill. The mom may be raising 4 young children, taking care of her husband, dealing with her own grief, and wondering what will happen to her when her husband dies. But, no one has said he is going to die, but she knows. She knows how very, very ill he is.

We have hospice brochures in the brochure rack of our hospital. They are beautiful and many people pick them up on their own.

Do you think the MD's think it is failure to send someone to hospice?

We as well have had some patients self refer to palliative care or hospice.

I find myself doing lots of teaching about hospice being designed for the last 6 months of life and that too often patients are referred too late.

Hospice is confusing for patients too because some think they could not do it at home and others don't want to go to a facility. Education to the MD's would help about what hospice is and that you can be cared for in whatever your home is.

Actually, I have gotten some patients to open the door to hospice by introducing it as excellent symptom control. Also, some patients may be interested in close provider relationship (hospice) once their oncologist doesn't have anything left.

There have been some articles I read that the MD's have a difficult time letting go as well.

It's not always the providers who are resistant. Providers will do what patients want for treatment . . . if patient wants to continue to next line therapy, physician generally will. I've seen some cases where pt was told no more chemo and pt went to a different oncologist. Hence my question about how can we more effectively communicate?

I think physicians want to see their patients cured—like all of us. But, it just does not happen for everyone. Our physician colleagues live in that death-denying society, too. There is always a hope that something is out there to help their patients. And for oncologists, many have known these patients for years—maybe cared for them when they were first diagnosed 10 years ago and now they are treating them again for a recurrence. It's difficult. They have a relationship with them.

I think it is difficult to let go and it depends on what type of illness. With so many options of treatment for cancer it might be harder where as end stage cardiac disease, well, there isn't much to offer but comfort.

And with oncology patients and new choices coming out all the time, well sometimes you feel like if this doesn't work, we will try something else.

I wonder sometimes if so much effort is put into the disease that we forget about the patient and their quality of life…

Maybe comfort from the start from the doctor and education is what is needed for end of life situations

…and/or a discussion with a social worker

Again, it goes back to communication. We need to know that we have all communicated the various options for patients—continue with chemo or enroll in hospice. People have the right to hear all options and make decisions accordingly.

And while addressing palliative care, we want to be sure we don't take away their hope either.

One of the great things about palliative care is that it is interdisciplinary. To have the social worker, a chaplain on board with the MD and RN is great!

Sometimes it helps to chat about what the patient's goal is for treatment...is it to live as long as possible? is it to be able to do certain activities? If the treatment doesn't have a good chance of helping the patient to achieve their goal, it's time to stop.

I have actually had patients sign up for hospice, stop active treatment for their cancer, symptoms improved both b/c no longer on treatment causing symptoms and then discharge from hospice, come back and try new treatment.

Yes, sure don't want to take away their hope. Perhaps their disease can not be cured and they will certainly die. However, we can give them hope in knowing they will not be abandoned, that their pain will be well managed, their symptoms controlled, that they can talk about fear, reassess spiritual care, etc.

I use these examples when communicating with patients and what hospice can provide for them and their families.

Yes, Heather, I have seen the same thing a couple of times.

People are afraid of suffering and of being abandoned. Those are two huge issues. Palliative care can address both of those beautifully.

One thing about working in this field is that I believe we all see the world a little different. Do you feel that way?

Definitely.!

Maybe we don't take things for granted—i.e. celebrating birthdays, first days of school, etc.

It changes our perspective everyday we go to work

It is a privilege to do this work and to be invited to help people along this journey—whether it is months or hours before the end of their life.

Keeps things in perspective for me- can't feel my life is too bad when I see what others are going through.

Have we "proven" hospice care? As I recall, one Medicare study showed no difference in cost between hospice care vs. non-hospice care. I realize cost is only one measure, but that was part of the impetus for the Medicare hospice benefit—cost reduction.

Agreed—I have NO problems compared to what many of the families I see daily are going through!

To be able to talk to patients and encourage them to reminisce can be so cathartic—just knowing that someone cares.

I appreciate your question about cost and this is an on-going dilemma. Palliative care is relatively a new sub-specialty and we are continuously looking at collecting data on costs of hospice vs no hospice.

Cost comparisons depend on the study...some show significant cost savings, others don't. It depends somewhat on the length of stay in the hospice program.

A study of heart failure patients actually showed that patients lived longer in hospice than with "traditional" care that included repeat hospitalizations. Here there was significant cost savings.

For any of you who would like to know more about palliative care, check out the End-of-Life Nursing Education Consortium (ELNEC) website. On that website you will find future train-the-trainer courses that you can take and return to your institution and train others in excellent end of life care. Website is www.aacn.nche.edu/ELNEC.

Is there any legislation regarding palliative care and cost reimbursement coming down the pike?

And, as mentioned earlier, the CAPC website has lots of great info

Sure. Of course the US government is looking at that now in the new healthcare bill. My congresswoman is very involved with this.

Geez, with the whole "death panel" debate, I bet we'll be hard pressed to see too many specifics about palliative care...

It would be great if we would all send a letter to our own gov’t officials, sharing your support of palliative care. They need to hear from us.

Agreed!

Will do

I know several nursing and medical associations are working on this. Go to the Am Assoc of Critical Care Nurses website and you will see a letter that they sent, along with some medical colleagues to Pres Obama about this.

AACN website is www.aacn.org

Has anyone thought of writing letters to the editor of their local papers to help educate the public on just what palliative care and advanced directives are? It might have some impact on the fears we've all heard expressed.

Take that letter and use it as a template and take it to your own local ONS chapter.

Yes, people have done that. Actually, my husband and I were recently interviewed on our local TV channel—my mother-in-law died 6 days after being diagnosed with AML and she had a DNR, AD, and she died peacefully—-just the way she wanted to AND with the palliative care team.

Thanks for a fun discussion, everyone!

Thank you all for your great discussion tonight and all of the terrific suggestions! Please don't forget to spread the word about the next chat on this topic, which will be on Monday at 3pm Eastern time. Thank you Pam, for your expert comments!

Thanks everyone! Appreciate this wonderful dialogue. Best wishes. .to each of you!

Good night all!