"What is an important to you?" and the PPS

[nutella, MSN, RN]

Hi - I wanted to increase some awareness about the most underused question to patients/families based on my recent experiences including a family pushing for a patient with endstage dementia to get a g-tube placement "because we can't let him starve to death" while at the same time saying "obviously we do not want the nurses to draw blood, take vitalsigns, or get an xray - we want him to be as comfortable as possible". Nothing matched the overall goals for the patient as identified by the family ("comfort") and got worse by the family's poor understanding of trade-off when it comes to therapies/interventions and the inability to understand that a certain treatment will not change the overall outcome or trajectory of illness (because the patient will continue to aspirate secretions and get pneumonia while the dementia functional decline increases further - but now we are prolonging the end of life with artificial nutrition and hydration and the patient will need restraints because of agitation).

Unfortunately, despite the fact that there were other admission to the hospital, nobody had a conversation with the family to explain the illness, how it progresses, what is to be expected, and the choices for treatment plans/care plan once the illness is at a certain stage. Now in crisis mode the family is overwhelmed and they do want the patient to be comfortable but they also feel that they "need to give him a chance" (???) because the primary care physician who is biased about treatment choices told the family "he will starve to death" and "there is a feeding tube" while not talking as much about other options or implications.

As nurses, you know that a lot of times out discussions and interactions are short and focus on the task on hand. Typical questions or discussions center around symptoms and scales "how would you rate your pain?" or "have you fallen the last 6 months?" and such.

I want to encourage everybody to also consider some other important questions that will actually point to if the care plan / care we provide is congruent with the patient/family wishes. It becomes more important to also consider this piece as we have much more treatment choices and options but they all come with a trade-off and do not necessarily meet what a patient considers a goal or is important to them. Also, patients and families still often do not understand that they have choices when they face a serious illness or an advancing illness and getting closer to the point where the physician estimates a life expectancy of 6 months or less. Often times we can see "the writing on the wall" in the progression of a chronic or serious illness and know that things are changing in the trajectory of the illness.

It is not the scope of a nurse to diagnose or to give a prognosis and the physician/ APN/PA conveys the diagnosis and prognosis. But as nurses we have another powerful tool which is based on a functional assessment. With a few questions you can usually get a good idea about "how patients are overall doing" because you also know their diagnosis from the MD.

The Palliative Performance Scale (PPS) is a validated tool which evaluates 5 items:

Ambulation level, activity level /evidence of disease, self care, po intake, conscious level

http://www.nhhpco.org/s-content/uploads/files/Palliative_Performance_Scale1.pdf

When you assess those 5 domains and also ask "how was that before this episode of illness" or "how was that 6 months ago?" you can draw some conclusions about the functional decline, which usually points to overall disease and symptom burden especially in conjunction with diagnosed conditions.

What is important is the difference in score or activities. Somebody can have a low functional status with a PPS 30% and stay in that state for some while especially when there is some artificial hydration or artificial nutrition is going on. But when a patient tells you that 6 months ago they were independent, able to walk, eat and drink, awake and now they are in the hospital and can't get out of bed, unable to eat or drink much, need help with all ADLs you know that there is something bigger going on.

I find it important to ask patients who have a significant functional decline or who come in already very declined to also ask with the initial assessment or at any point later if time was too short

"Can you tell me what is important to you?" and "do you have specific goals?"

If the patient can't tell because of confusion/ inability to converse I ask the family. The goal is to initiate a discussion earlier in the disease process when people are less stressed out and able to think about it.

It is important because as nurses we want to know our patients better and also understand if the care plan is matching their overall goals/ priorities/wishes. Nurses are in this unique position to identify when the care is not congruent because we see the patient throughout the shift / day and do not look at the diagnosis only. We can see the patient in a more holistic way.

Have you ever wanted to pull your hair out because the specialist says to the patient/family "everything looks great - your heart is excellent" and the patient also has multiple other significant problems besides CHF like COPD, cancer, forgetfulness, diabetes, and can hardly get out of bed or take care of themselves ? Because as nurses we know that the spcialist is just addressing this one piece but the bigger picture conveys a different message.

By asking about what is important to them and explore important goals, you can get an idea of congruence and you might be able to intervene and advocate for your patient in a different way.

If a patient is chronically ill and let's say 85 y old and tells me that he only cares about "not feeling short of breath" and the overall ability to sit in the recliner and watch football and values some form of getting out of bed highly the care plan and treatment approach can be very different from somebody who is chronically ill and also 85 y and who says that the goal is to get to the granddaughter's wedding in 2 months and to go through aggressive treatment because that patient is willing to sacrifice / trade-off for example comfort if it means he can in the end go to the wedding.

Nursing implications are to advocate and educate patients and families about the fact that they have choices and that they can talk to the physician about treatment that matches their overall goals and preferences best. Provider bias in some cases leads to families not knowing that they do not have to put in a feeding tube in end-stage dementia for example or that they can talk to the oncologist about stopping a palliative chemo that is making the patient so sick that the patient feels they are gaining some time (because it is not curative - will only extend time) but now they can not use the time for anything because they are constantly weak, nauseated, tired, and so on.

Nurses often know instinctively that when a patient comes in more often or appears very sick that there should be a serious illness conversation preferably with a team/family meeting to make sure that there is a discussion about "where to go from there". In an ideal world, the primary care provider would have this discussion within their trusting relationship and before a crisis but we know that only a very small amount of patients have those discussions and often enough the hospital is the place where this happens.

Nurses can help a lot by identifying when a patient needs to have a more comprehensive discussion about their goals, wishes, preferences if the illness gets worse. The goal is to make a "plan B" and discuss if the treatment/care plan is congruent with wishes.

At times I mention to the provider what I learn from my questions to give them a different perspective and it can really shift the way providers talk to their patients about treatment options.

When I tell the hospitalist that the patient feels strongly about spending quality time without pain/suffering and does not care about the amount of "time" that can get added - meaning quality of life becomes more important than just purely "longer life" it changes the approach and the way providers talk to patients. What I found is that they will also tell patients in this scenario the options but most often also add if that therapy or treatment will change the overall outcome or if it will most likely add mostly discomfort or negative things while not providing some benefit that is important to the patient. That influences what patients and families decide.

If a provider explains that "yes, we can try the new immune-therapy for cancer that you have seen on TV but it will also take x weeks to work and will most likely have this and this side effects that could interfere with your goal to spend quality time with your family at home" instead of "let's try this immune-therapy" obviously the patients and families will start to think more about the trade-off.

Nurses are the biggest advocates and patients appreciate when nurses advocate for them / give them the tools they need without pushing their own agenda.

[NotMyProblem MSN, ASN, BSN, MSN, LPN, RN]

Disclaimer: I did not read the entire post.

The only way that I would not opt for 'artificial nutrition' is if it was determined that I or my loved one was not expected to live past the next 3-7 days, regardless of the benefits or lack thereof.

That "6 months or less" life expectancy will definitely be less if food is withheld from an individual. I would never advocate for starvation...unless artificial nutritional means have been attempted, with resultant aspiration and/or repeated vomiting.