Palliative Care Round Up

[nutella, MSN, RN]

As nurses, we are well equipped to provide care for patients when they are acutely ill but we also need to learn how to address the other needs of patients who are chronically ill and moving towards the end-of-life or patients who have a serious illness that is now getting worse, not getting better, or deteriorating. I do not want to bore anybody with numbers, I think any nurse who works with patients (unless pediatrics...) has noted a shift in patient population we see in offices, acute care, and home care.

The basic idea nowadays is that all care should take place in the community and acute care hospitals discharge patient earlier and sicker than ever before into the community because home health care has caught up and is able to provide services in the community. There are new "service lines" in home care, for example IV lasix programs to address the fluctuating needs of patients with CHF.

So what is going on are several things but one is that because of science and medicine the population is living longer, living longer with serious illness, and the trajectory of dying has changed. For a visual and graphic look here and scroll down to see the graphs:

Untitled Document

That leaves all of us with some problems as the government and society scrambles to figure out how to finance all this healthcare including high cost interventions, very expensive new cancer treatments, and ongoing costs for the population that accumulates more illness and lives longer. Please see this TED talk from Atul Gawande who is on the forefront of this problem (he is a surgeon, writer, and involved in the Ariadne Lab) - he summarizes the problem we are facing very well, it is a great TED talk:

Atul Gawande: How do we heal medicine? | TED Talk Subtitles and Transcript | TED.com

My personal opinion is that palliative care needs to be integrated as much as possible into primary care and primary nursing as well. Every bedside nurse, nurse in the office, or in other functions should be able to have current knowledge about palliative measures, what palliative care means, how it is different from hospice, and be informed of what is important.What knowledge you need depends on your patient population and also the illnesses that you encounter most.

I highly recommend this page and to read the transcript or watch Atul Gawande testify before the special committee on aging. There is also a video available if you like to listen to it.

Read Dr. Atul Gawande’s testimony before U.S. Senate Special Committee on Aging on serious illness | Ariadne Labs

One of the main points is that palliative care should not be about a "good death" or about a "good end-of-life" --->

from the transcript of the above cited testimony:

My investigations made clear to me that we've been unclear about the goal of good care for people with unfixable problems. It is not mere bodily survival. Nor is it a good death. The goal is to have as good a life as possible all the way to the very end. (Atul Gawande).

I guess this is the best summary of what is going on in serious illness care, palliative care, end-of-life issues right now and why a lot of people now talk about palliative care. But I do not agree with people who ask for more specialists and to fragment care further. I think that there is a need for specialists but I also think that most palliative care is better when integrated, I think it provides overall more value (perhaps I will write about that more at some point).

Recently I went to a training to become a trainer for serious illness conversations and was getting into a conversation with a physician from primary care. What she noticed is that they are seeing more patients with dementia who get older and who get the typical problems as the illness approaches the end-stage. Families and patients appear not prepared to deal with the changes at home and often have a poor understanding of how the illness progresses and what it all means.

I see the same thing in the hospital and have seen the same thing in the community.

What I noticed is a poor understanding of the functional decline. Patients go through the stages of illness and loose their ability to function,in the end the ability to swallow, which is the point when we see those patients more in the hospital and MD office as they continue to aspirate and develop aspiration pneumonia. They also loose weight because appetite is less and there is no drive to eat. In addition, incontinence has it's own problems and can lead to UTIs and skin problems. Behavioral problems can become a huge problem for families who may not understand how to deal with it. Heck - even nurses have a hard time dealing with it unless they deal with it a lot and /or have some more training.

The number one question I get asked as a nurse a lot is "If I can make him/her eat - will he/she recover from the pneumonia?" and "if I put a feeding tube in and give nutrition this way, will my father/mother live longer?"

Question number one often reflects the poor understanding of the illness and as a nurse I usually educate on how the illness progresses typically and that the "normal" strategies do not work well with dementia. And for question two I usually say that while it would enable a person to get nutrition and hydration that way - it will NOT fix the underlying problem, which is that swallowing is not possible without aspiration in progressed disease and aspiration will continue as saliva (which is contaminated with bacteria ....) continues to run into the airways.

A lot of times the response is : "What ? What do you mean - there is nothing that can be done??? I can not just let him/her die!!!"

And the problems clearly is that families and patients do not get information about the illness early enough and it seems that primary care physicians do not have a good handle on making sure they talk to families and patients from time to time about the expected decline.

Nurses can make a huge impact here and ensure that the family understands the illness and how it progresses plus provide some information:

About Alzheimer's Disease: Caregiving | National Institute on Aging

Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging | National Institute on Aging

Additional "Fun" Fact:

The progression and eligibility for hospice when the primary diagnosis is Alzheimer's Dementia is the FAST scale. And just having Alzheimer is not enough to admit somebody to hospice. There needs to be a certain stage of Alzheimer and documentation of decline like weight loss and additional symptoms like UTIs/ pneumonia/ pressure ulcers...

Some hospice providers may admit to hospice earlier but this are overall criteria that a lot of hospices adhere to now. Here is some info about hospice admission criteria including the FAST scale:

http://geriatrics.uthscsa.edu/tools/Hospice_elegibility_card__Ross_and_Sanchez_Reilly_2008.pdf

[Kitiger, RN]

Thank you Nutella. It will take me a while to work through this, but it does look very interesting and helpful.

[AceOfHearts<3]

It's so sad to me that these conversations aren't happening more often and sooner. I had a 90+ patient with advanced dementia and the spouse refused to change them to DNR. I think there should be a requirement that once a person starts to receive Medicare they should have at least 1 meeting (preferably more) with a palliative care team (with spouse, adult children, etc. present) to discuss goals, living wills, etc. and it should be re-evaluated every X amount of years or with a change in diagnosis. The initial meeting(s) would be the one to introduce info on quality vs. quantity before everyone is emotional with a possible death looming. I feel like this would save heartache and resources in the long run.

[nutella, MSN, RN]

Thank you Nutella. It will take me a while to work through this, but it does look very interesting and helpful.

Thanks - this is the advantage of online material ---- it is waiting for you when you have time ....

It is a lot but even if you choose just one thing to watch or read it will add to your perspective of nursing!

[nutella, MSN, RN]

It's so sad to me that these conversations aren't happening more often and sooner. I had a 90+ patient with advanced dementia and the spouse refused to change them to DNR. I think there should be a requirement that once a person starts to receive Medicare they should have at least 1 meeting (preferably more) with a palliative care team (with spouse adult children, etc. present) to discuss goals, living wills, etc. and it should be re-evaluated every X amount of years or with a change in diagnosis. The initial meeting(s) would be the one to introduce info on quality vs. quantity before everyone is emotional with a possible death looming. I feel like this would save heartache and resources in the long run.[/quote']

The good news is that what you write about - and what is common sense to most bedside clinicians especially in acute care - is getting much more attention.

Medicare now has two billing codes that providers can use to discuss advanced care planning with patient

https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf

But it probably does not make much sense to have serious illness discussions when somebody is totally healthy. But what should happen is to designate a health care proxy and have a discussion with that person about wishes and goals in a general way.

Once a patient is diagnosed with a serious illness, the primary clinician should probably have the first discussion to check if the patient understands the diagnosis and explore what is important to them.

It can include to talk about the expected trajectory of the illness but could also happen in the form of "I am worried that your illness may get worse suddenly or that things do not go as well as we hope".

The thing is that if a clinician who has no real connection and relationship with the patient/family addresses the code status in an acute situation they are less likely to respond in a constructive way. They are stressed out, are afraid that the MD will stop treating if DNR/DNI. And I also learned that there is a mistrust towards the healthcare community that seems to be more prevalent in some cultures or communities. Sometimes people truly do not seem to understand that an medical treatment like chest compressions and intubation will only add to suffering and not result in a meaningful life or change the overall outcome. But at times it is more the expression of a power struggle between the family and the provider/nurse and more like "you can not tell me what to do".

And a lot of providers do not have the skills to have a meaningful conversation about goals for care.

But most patients would rather talk to their PCPs or specialist about their goals for care and only so and so many need a palliative care specialist or consult. So goals would be to provide clinicians with tools to have those conversations without leading to more resistance.

[Swellz]

I'm always in awe of how our palliative care team handles goals of care conversations. To balance the medical side and the emotional turmoil everyone is experiencing is an art.

[WKShadowNP, DNP, APRN]

I'm always in awe of how our palliative care team handles goals of care conversations. To balance the medical side and the emotional turmoil everyone is experiencing is an art.

At least when they know what they are talking about. Before my dad was discharged from ICU home with hospice the palliative care nurse was arguing with my dad's wife about his getting IV antibiotics for pneumonia.

"If you are on hospice, you can't have any further treatments."

I spoke, from several states away, to Dad's primary nurse and set some things straight. That palliative care nurse didn't even know (neither did his primary) that he had a living will, that Widow-to-be was primary and I was secondary for making decisions. (technically, for implementing his decisions.)

So he got to go home with his oxygen and oxymizer, his antibiotics (which did help keep him comfortable), and the typical comfort measures care pack (atropine, morphine, ativan: YMMV).

The palliative care nurse missed the major point of palliation and hospice care. Comfort. We weren't treating his pneumonia with the hopes that he would be healed and have more time. We didn't want his last weeks to be full of anxiety ridden shortness-of-breath. Both his wife and I (and my sister, aunts, and grandmother) agreed that his end was near, how can we make it less difficult?

A different palliative care nurse was assigned to help us realize his desires and ease our concerns/fears.