NBC’s Parenthood provided a virtually flawless illustration of the end of life process millions of Heart Failure patients and their families go through every year. Unfortunately, our fast paced profit driven healthcare system presents grave challenges that threaten the integrity and moral/ethical components of that process. More often than not, these patients and families do not receive the high quality compassionate care they should be getting and are admitted to Hospice programs later than they should be. Aside from the fact that nurses often work understaffed and with limited resources, nurses are not adequately prepared in school for the unique challenges that accompany the care of the dying patient and family in a way that best meets everyone’s needs, thus creating a disparity in this area of healthcare. It’s the perfect storm: Fast pace, impossible nurse to patient ratios, limited patient care assistants, and a knowledge deficit all conspire to compromise the level of care patients with chronic progressive diseases like Heart Failure receive.
On the heels of an emotional few nights watching the series finale of NBC’s Parenthood (my favorite show next to Scandal) I was inspired to share some of my own experiences as a Heart Failure and Heart Transplant Nurse, the challenges I faced while trying to provide best care, and some of the things I learned to do along the way that helped me to accomplish the best outcomes I could for both patient and family. My goal? It was never perfection, rather, it was to get both the patient and family as close to the best case scenario as I could while utilizing all the resources that were available to me. My hope is that some of you newer nurses or primary caregivers will discover something in this article that will be of use in your own day to day journeys with patients and loved ones. Make no mistake– chronic progressive disease management and end of life planning takes a lot of time, balance, patience, good communication skills, and work.
Time is of the Essence
The standard environment of a traditional Telemetry/Progressive Care Nursing unit is a rapid and ever changing place to practice, with little to no time to accomplish what Corporate America expects of the nurses providing care to patients. This is where the “heart of the problem” lies when it comes to unnecessary readmissions and frequent decompensations. Remember, that each time a Heart Failure patient comes back to the hospital in a decompensated state they may actually lose a little more heart function, making it harder for doctors to get the patient back to where they were at before they started going downhill. Look, I get that there are a mountain of things to do in a day, rounds to go on with the doctors, interdisciplinary team meetings to attend etc etc. However, what I am asking you to try takes all of five minutes. Maybe even less time than that:
1.)Sit down. 2.)Face your patient. 3.)Ask critical questions. 4.) Evaluate your outcomes
Before you start running down a list of excuses for why you can’t take the time to sit down next to your patient and meet their gaze, feel their energy, hear where they are at and see what they see for their future—remember one thing—it’s a conscious choice you make. The five minutes it takes to ask these questions during the course of your care helps to tailor teaching to the unique needs of your patient. This approach accomplishes two things: It manages your time better so you aren’t doing excessive teaching that isn’t in alignment with what the patient wants or needs, and it increases patient responsiveness to teaching efforts because you are engaging in discussing issues that truly concern them. The readmission rates for Heart Failure patients clearly demonstrate that those “Heart Failure education packets” you plop down on the patient’s bedside table or print out for discharge day are NOT WORKING. They aren’t ENOUGH. So change it up. You really do have the power to positively impact every single patient with the diagnosis of Heart Failure. You really can make a dent in readmission rates. You really can make a difference by helping to improve and support the quality of life of these patients. HINT: A good measure of your nursing care is whether the patients you have helped care for remain out of the hospital for greater periods of time….or they keep bouncing back.
The Patient’s Perception IS The Reality
The first step to finding out everything you need to know about your patient in the shortest amount of time possible is to first “get” the fact that you the nurse DO NOT KNOW MORE THAN YOUR PATIENT. You don’t know what life was like for them before Heart Failure, what it has been like since they were diagnosed with Heart Failure, or what they think a good quality of life is and what it is not. You don’t know how they view themselves or how their self esteem is holding up. There is no amount of teaching, lecturing, videos, or piles of patient education packets that will help improve your patient’s health status and help them to maintain a relatively steady status quo that will keep them out of the hospital if YOU DON’T GET TO KNOW YOUR PATIENT FIRST. WHAT YOU DO KNOW IS: the medical team’s thoughts, opinions, recommendations, concerns; your nursing knowledge and experience with Heart Failure Patients; what the literature says is “good for the patient,” and what the CMS has established as the CORE Measures mandated for all Heart Failure patients in order for your hospital not to get dinged by Medicare. (We all know how much hospitals hate to lose that incentive money at the end of the year for not being in good compliance with the CMS)
Focus on the concept of continuity. I used to work on a unit where many of my patients were either frequent flyers or they actually lived on our unit for long periods of time while waiting for transplants. They were on IV inotropic agents, Total Artificial Hearts, or BiVADS. I made a habit of closely observing and listening for changes in the patient’s demeanor, motivation, energy, sleep patterns, and the things they talked about over time. A good place to start dialoguing would be by asking how the patient thinks things are going with their health, whether Heart Failure is interfering with daily activities they enjoy (if it is, are they sad?). Ask him/her what constitutes a “good day or a happy day.” What types of activities does the patient engage in for pleasure and for socialization? Is socializing a big part of their life? Are they still able to participate in activities that contribute to their happiness?
Be bold. Ask your patient what is important to them when it comes to their healthcare. What is their definition of a good quality of life??? What defines a poor quality of life? Where do they rate their life on a 1-10 scale pertaining to overall quality of life as they have defined it? Often you will encounter patients who are getting treatment because their families are “forcing them” to do it. If you suspect this, it is crucial that you watch for opportunities to sit down and engage in some quiet, open ended, one to one discussion time with your patient to find out if this might be the case.
Please Note that many of the questions I have suggested above can be asked while hanging your Lasix, shooting your cardiac outputs, drawing labs, emptying the foley bag, or helping your patient get in a little bit of ambulation time around the nursing station. Adopting this approach doesn’t take a lot of extra time out of your shift when you fit the questions into your care routine. You simply make it a habit. Every patient, every shift. In doing so, you are gaining valuable insight for the healthcare team, ultimately helping to keep the patient at the center of all care planning and goal setting.
Burying the Barriers
Usually in their 50’s and 60’s, Heart Failure patients often present with concomitant anxiety, depression, and social withdrawal as they come to the realization that they are unable to do what they used to— whether it be going out with friends, the grocery store, the mall, out to eat, or to church. Simple things like caring for themselves, taking a walk around the block…or the few steps it takes to make it to the mailbox become insurmountable tasks.
The medications themselves make these patients tired. Adhering to the Heart Failure self care regimen, in and of itself, can be a daunting mountain to take on. It is indeed, a constant climb. Half the battle to medication compliance is making sure your patients understand what each medication is doing to help them. Living with advancing Heart Failure is a one step forward ten steps back lifestyle even when the right resources and support system are in place for the patient. Remember that cultural beliefs toward illness, spiritual beliefs, language barriers, and whether a patient can hear, see, or read properly are all additional barriers to good quality care. They are all factors that, when unassessed, lead to non adherence to the therapeutic regimen, frequent decompensation, and readmissions to the hospital.
Health In Illness
I know it sounds old school, but if you revisit many of the nursing theories we learned about in school its easy to see that at the heart of each of them is a common denominator—the concept of wellness within illness. There is a way for patients to be healthy even with a diagnosis like Heart Failure. Health can take the form of a patient managing their disease to the best of their ability, taking time throughout the day to walk and space out activities so that they can do the things they enjoy, or maintaining their ability to perform ADL’s on their own. It can also take the form of actively engaging in end of life planning.
Part of maintaining wellness in illness is making sure the healthcare team is meeting the needs and desires of the patient at all stages of Heart Failure. The trajectory of the disease is such that it is different from person to person so it’s imperative to constantly re evaluate your patients each and every time they come into the hospital to find out if the answers to your questions have changed. The plan of care will likely need to be changed several times. Because Heart Failure is a chronic progressive disease its effect on a person’s body is not a static one….thus a patient’s perception of life, their priorities, the emotional impact of facing their own mortality, their short term and long term healthcare goals and preferences will all be subject to change as the Heart Failure advances.
The End Stages
As a nurse, you only get three 12 hour shifts in a row to accomplish some pretty big things with both a patient and family so that they are afforded what every human has the absolute right to—a peaceful, comfortable, supportive end of life process that is centered on them and their choices. Believe me when I say there is A LOT packed into that all too short period of time. It isn’t easy and there are often many obstacles. But more importantly, first and foremost —you have to LOVE this kind of nursing. You have to BELIEVE with every bit of your own heart that you are going to give this patient and family 250%….because you don’t get a redo. This patient and their family do not get a redo. There is no second or third time to get the end of life and dying process “right.” Remember this—you are helping to shape the memories a family will have for life.
How a nurse interacts (or fails to interact) with a patient and family during this critical time will be remembered by family members for decades to come. As a nurse you must be resolute in your efforts to put the patient and family going through the death and dying process on absolute “VIP status” and commit to it no matter what your day is like. Yes, it is possible. Many of us have done it, and it comes down to this—there are no excuses— you find a way, you MAKE A WAY to attend to these patients and families as if it were your own mother or father lying in that bed at the end of life.
There have been plenty of times in my career when I was told during shift report that I didn’t have to “worry about room 311 because they are on their way out, they don’t need anything really,” “Just stay away from room 311 because the family has been so needy because the patient is dying and once you go in there you’ll get trapped,” or “the family has been stalking me at the desk for more pain medication for the patient and I cant get anything done.” Here’s my personal favorite: “Just give that patient to the nursing student.” (Note—-none of this EVER occurred at the Mayo Clinic where I worked as a Heart Failure/Heart Transplant nurse) But, it DID OCCUR everywhere else I worked.
Nursing and Navigating a Family to the End
As a nurse you are confronted with different issues when it comes to the prognosis of death. I found that most of the time problematic and complicated issues centered more on the family dynamics. Utilize your interdisciplinary team members as soon as you can: Call on your social workers, chaplains, and case managers to help you keep tabs on the family dynamics and to assist with this difficult time if and where they can.
The bigger the family—the more potential obstacles there are to an optimal, therapeutic experience for all involved. Issues from the past can flare up during this tenuous time– often with the patient in the same room. A few family members will insist that “everything be done” no matter what the patient wants. The family member who is the designated Medical Power of Attorney and knows exactly what the patient wants can become trapped in a vice like position between the patient and the rest of the family—becoming a potential target for the other family members emotional outbursts. You will encounter the quiet, neutral, family members who sit back in the corner of the room observing, processing internally, and occasionally interacting with the patient when the others leave. The most challenging scenario for me as a nurse involved the family members who would directly confront the patient about their end of life choices, potentiating further family discord and distressing the patient at an already sensitive time for everyone. It can be hard to keep front and center in your mind, but the whole family is now your patient. A good outcome cannot be achieved for the patient without making sure everyone’s needs are assessed and met at some level.
The spouse or significant other of a dying patient requires special care. Check in with them frequently to ensure that he or she is not getting snagged in the middle of everything and everyone, subjected to further confusion or physical and emotional exhaustion by all of the above. Encourage the spouse to get regular periods of rest and do this by scheduling an hour or two that is blocked off for both the patient and spouse to have rest time to themselves without visitors.
Occasionally, the patient may have a new spouse that the children do not accept or acknowledge as the legitimate life partner of the patient and this person is vulnerable to becoming isolated from the process —thus leaving them subject to a lack of support and a poor experience with their loved one’s end of life process. These are just some of the issues I have experienced in my career. Rarely, and only twice, have I seen a physician insist the patient get more surgery instead of listening to what his patient wanted—which was going home and doing things on their own terms, while in familiar comforting surroundings and loved ones– rather than the cold clinical setting of a hospital room.
Every patient and family is different…..their spiritual beliefs, their cultural beliefs, their values, their beliefs about death, dying, and about the healthcare system….this is why it’s so important NOT TO AVOID THE ROOM, BUT TO REMAIN AS CLOSE TO IT AS POSSIBLE. To be part of that circle that surrounds a dying patient, or to BE THAT PATIENT’S PERSON IF THEY HAVE NO ONE. My theory? If you knew me well enough as a nurse, you remember my mantras: “No one dies alone. Ever. We are not born alone into this world, therefore as a nurse I will never allow any human to depart this world alone.”
The whole point of nursing is to walk alongside a patient on parts of their life journey, to support their reality in any way we can, empower them, guide them towards wellness whether on the path to healing or on the path to death, and the only way to do it is to find out what that journey is about, what it looks like, and where a patient see themselves headed. The earlier we begin talking to our patients and asking these questions, the more often we reassess and learn who our chronic Heart Failure patients are, the better quality of life they will have throughout the progression of their disease…and the end of life experience they envision for themselves and their families.
Sometimes, all it takes to be the best nurse for these patients is time. Just five minutes of careful, thoughtful observing and listening. So put down the echo report, the labs, take a break from the charting or the chit chat at the nursing station and go into that room and just “be” with your patient.
I believe, that’s where the best outcomes begin.
NURSEINTERUPTED 