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A Voice for Nursing

Part 5: A time to bring our distress to the surface and take a good look….

July 13, 2020

The concept of health disparity is not new to nurses.  Gaps in access to care have been widespread, and recent attempts to address them through health care reform have been highly publicized these recent years. 
    
Palliative care research in this area abounds, revealing differences in health outcomes for people of color, including higher cancer mortality, inequitable pain management, fewer advance directives, and less participation in clinical trials. 

Lately, the COVID crisis has brought to light significant race-related ethical issues in health care, as a disproportionate number of deaths have occurred in minority populations. Public health scientists are theorizing that these tragic numbers arise from a myriad of sources: more underlying health conditions, more crowded housing, and higher numbers of exposed essential workers are among the many reasons.
 
In hospitals, nurses tell how they see the heartbreak of inequity. Nurses are the ones at the bedside who note that those from poverty may not have the same access to Wi-Fi or electronics needed for video visits with those they love. Nurses are the ones to explain complicated medical information to those with lower health literacy, hoping that they truly understand the choices they must make. During times of critical surge, nurses report lying awake at night, worrying about the thought that access to ventilators or ECMO might not be allocated justly to non-white patients.  We sometimes feel helpless in the face of such overwhelming forces. 

Throughout these two massive events: the COVID pandemic and the Black Lives Matter movement, we have been confronting senseless death. We are faced with two deadly ills: an aggressive virus that is far from gone, and the established racism still active all around us.  We have not yet recovered from the trauma of COVID when we are now confronted with further intensity.

In a recent webinar, “How am I supposed to feel? Addressing Moral Distress in Times of COVID,” clinical bioethicist, Dr. Ira Bedzow describes how moral distress sometimes results from guilt: feeling like one should have or could have done something more. This is a common theme heard from nurses during COVID. They may feel guilt for failing to prevent so much death, for not being able to provide end of life care they know is best, for not spending enough time in patient rooms, for having job security, and for surviving when so many do not. Many nurses cringe at being considered a “hero” – because there is so much more we wish we could do.

That same emotion of guilt may plague some of us in the health system when considering our country’s long history of systemic racism. Care providers may feel guilt for all the same reasons cited above, but also for being entrenched in an unfair health system with glaring disparities between private and public care, and of not standing up to such disparity more powerfully in the past. 

We cannot allow this moral distress to engulf or disable us. Systemic racism is entrenched into the fabric of our society and will not be an easy fix.  Moral distress often stems from a sense of helplessness.  But the marching voices of tens of thousands are proving we are not helpless. Let us support and embrace the BLM movement. As hospice and palliative nurses, we believe we provide compassionate and just care. Yet we likely all demonstrate implicit bias and unconscious acts that may support or compound the problem. Education, self-reflection and discussion are essential, with loved ones, colleagues and counselors. 
    
We need to bring our feelings of distress and guilt to the surface and examine them. We can forgive ourselves. We can re-frame and re-focus on the good we bring to patients and families and look ahead to the proactive work we can do in the future. 

Keep up to date on COVID resources, as the virus continues to spread in many places. Learn from current experts on racism on both personal and systemic levels. Engage with colleagues on important ideas. We can look ahead to work in curbing the suffering associated with these intertwined major public health events. 

Remember: A Voice for Nursing is a Voice for Patient Focused Care! 

Dorothy Wholihan, DNP, AGPCNP-BC, ACHPN, FPCN, FAAN
Clinical Associate Professor
Director: Palliative Care Specialty Program
NYU Meyers College of Nursing

 

Part 1: Lessons Learned from the COVID Surge

April 24, 2020

Nurses at the epicenter of the COVID pandemic continue to struggle daily to save lives in rapid decline, comfort hoards of dying people, while worrying constantly about carrying the virus home to those they love.

Nowhere has been harder hit than New York City, as a gateway entrance to our country and a densely populated city.  Although the curve may now be flattening, patients, families and staff still suffer, as death tolls continue to be high.

What can nurses from other parts of the country learn from those who have worked through surge conditions? We interviewed nurses from all kinds of settings to ask: What would you tell a nurse who has not yet seen the worst COVID has to offer? New York nurses offer advice might help fellow nurses as they work to prepare for surge conditions.

Question # 1:  How can we get our patients ready?
  1. Be proactive! Palliative care specialty teams should have a seat at the planning table, and nursing voices must be heard, or we will be swept along without a voice, and patient care will suffer. 
     
  2. As hospitals prepare, stockpiling PPE and ventilators, prepare your patients too! Speak to primary care providers, senior centers, residential facilities and churches. Strategize to contact all patients who are at high risk for complications: elders, those with multi-morbidities, residents in nursing facilities, & those with serious illness. Remind your patients of that palliative care motto: “Hope for the best and plan for the worst”.

Here’s how patients and families can be prepared:

  • Identify & assign a health proxy, and talk now about what matters to you should a worst-case scenario occur. Patients, who deteriorate, do so very quickly! When things go downhill, it may be too late for considered thinking. 
    Here is a guide that can help with health planning.
     
  • Prepare a just-in-case “Go” hospital bag. Include anything you might need for a hospital stay (families often cannot visit at all):  Consider packing ahead or making a pack list for last minute items. Label everything with your name.
    • Cell phones or tablets & chargers
    • Personal medications (a list and the actual medications since there may be drug shortages, especially for inhalers) 
    • Glasses and hearing aides!
    • A copy of your proxy and advance directive 
    • Phone list of important family contacts (and identify one main person who can be the main contact for everyone)
    • A few (just a few!) comfort items that may be important (religious item, family picture, etc)
       
  • Some patients may deteriorate before they even get settled in a hospital unit. Consider a personal checklist: “Things to know to take good care of me.” Consider including the following information:
    • Is religion important? 
    • How do you like to be called?  
    • Who is the most important person to call?
    • Any other personal or medical information of importance?

Here is a video that can help you think about a Go Bag.

Remember: A Voice for Nursing is a Voice for Patient Focused Care! 

Dorothy Wholihan, DNP, AGPCNP-BC, ACHPN, FPCN, FAAN
Clinical Associate Professor
Director: Palliative Care Specialty Program
NYU Meyers College of Nursing

Part 2: Ready at the Bedside

May 6, 2020

Being a nurse in the midst of COVID entails physical stamina – but also an amazing degree of flexibility and creativity. Nurses have been struggling with the “not good enough” syndrome, where they are challenged by providing a level of care - which while appropriate and effective in times of true crisis -  nonetheless falls below the high level of care they want to provide for patients. That is: to plan care thoughtfully and deliberately, to take extra time to bear witness and comfort patients, and to connect deeply with families. Optimal care is not always possible in a pandemic!

This situation calls for hardiness and spirit – and a degree of creativity - to provide the best care under extreme conditions.  An oft-heard quote: “Out of chaos, comes opportunity” can be amended to “Out of chaos, comes innovation.” 

We urge you to write, post, and share through our ELNEC media – or even just to a group of colleagues during a break – some of the innovations that nurses are spearheading. By sharing these creative best practices, nurses across the country can better prepare to adapt to the chaos of COVID bedside nursing. Here are some ideas nurses are sharing:

1. Raise your voice and be heard!  At times, as the care provider spending the most time within COVID rooms, nurses frequently report they have been left out of the loop: missing rounds, not adding to medical/care plans, at times feeling they are swept along without contributing. To improve team communication, nurse Jhoanne Hilario, from NYC, developed her own “ICU RN-Provider Checklist”. She uses this list to check in with the medical staff daily, while introducing herself to unfamiliar, sometimes less experienced volunteers and those rotating from other services. Most importantly, the checklist ends with a discussion of goals of care. Take a look and edit to make one of your own! 

2. Creativity for logistics at the bedside. Nurses are frequently at the heart of innovation. Examples include: Placing IV pumps and vent controls outside rooms, taping off the floor for safe PPE donning & doffing areas, and using dry erase reminders on ICU room windows. Click here for a chart of logistic innovations developed by nurses that prove  - “When there is a nurse around, there’s a work-around” (Newby, et al 2020) 

3. Patient-Centered Care.  Nurses consistently cite patient isolation as one of the more distressing aspects of COVID, as patients die without family and surrounded by caregivers in impersonal masks. For those not actively dying, emotional distress, depression and delirium can develop. Nurses brainstorm and innovate, for example using Face time on cellphones and placing IPADS on IV poles to provide face-to-face connections. And watch this humorous CNN video about making connections while masked. 

 

Remember: A Voice for Nursing is a Voice for Patient Focused Care! 

Dorothy Wholihan, DNP, AGPCNP-BC, ACHPN, FPCN, FAAN
Clinical Associate Professor
Director: Palliative Care Specialty Program
NYU Meyers College of Nursing

 

References:

Moos, J. (April 10, 2020). Medical workers combine heart and art for their patients [Video]. Retrieved from https://www.cnn.com/videos/us/2020/04/15/medical-employees-wear-photographs-over-gear-moos-pkg-ebof-vpx.cnn/video/playlists/wacky-world-of-jeanne-moos/

Newby, J. C., Mabry, M. C., Carlisle, B. A., Olson, D. M., & Lane, B. E. (2020). Reflections on Nursing Ingenuity During the COVID-19 Pandemic. The Journal of neuroscience nursing, Published online 2020 Mar 27. doi: 10.1097/JNN.0000000000000525

 

Part 3: “Self-Care: Are you kidding?”

May 19, 2020

Nurses are notoriously bad at self-care. We care for others. That’s our passion, our calling, as well as our job. Our own care tends to come in second (or third or fourth) behind all those we care for.

Nurses work late, regularly skip lunch, and delay bathroom breaks – all to put their patients first. In the time of COVID, as we face dangerous exposure and worry about our families, self-care can seem egocentric. To some, even the term self-care provokes a sense of unconscious selfishness and resulting guilt.

So I was not surprised when I asked a group of front line nurses, what they do for self-care? They laughed in response: “Self-care: Are you kidding? We complain a bit and then get back to work.”

Yet, we are getting tired of this pandemic; we’ve been frightened and may still feel worry daily.  Many of us continue to see extremely high levels of suffering and death – and worst of all - patients dying without loved ones at their side. In parts of the country where the crisis is improving, we are still caring for seriously sick people and may still be short staffed. We feel fatigue on so many levels. 

Nurses are also reporting they get inundated with self-help emails, social media suggestions, employee health reach-outs, webinars, and journal articles. The COVID crisis has spawned a new term: “resource fatigue”!

In the midst of this, how do you approach taking care of yourself?  How can you actually make time for yourself? Here are ideas provided by front line nurses to help simplify your thinking. Take 10 minutes to make a list of what might work for you:

  1. What are the “firsts”? What has to come first when you get home? Can you find joy in any of these responsibilities?
    Nurses tell me that walking the dog or bedtime stories can lead to a new sense of appreciation when viewed next to the enormity of what they have witnessed during their shift.
  2. What do you love and cherish most? What gives you joy? Or strength? How can you get more of this?
    Nurses tell me they have found find new appreciation for simple pleasures- like fresh air and sunshine, a hot bath, or a junk romance novel. Take a look at this video for a new appreciation of usual activity, entitled “How to take a walk.” 
  3. What does your physical body need? Exercise? Better sleep? A haircut? 
    Nurses admit that these are often the needs that go first in order to conserve energy for the demands of patient care. Making concrete plans might help. Make formal calendar dates for a Zoom exercise class with friends, intimate time or a YouTube guided haircut. Meeting basic needs can become special events.
  4. Now the hard part: self-reflection and mindfulness.
    Nurses say they have no time to process in the midst of a crisis. That’s ok. Do what you can to stay healthy through the worst times. Let off steam in small increments if needed. Can’t talk about it? Journal it! The Internet has journal guides of every type (no promotions here: just Google around to find what might work for you). Here are some suggestions from nurse-journal-ers. Look for these online:
    1. A journal with guidance from Michele Obama
    2. Tiny, little pocket notebooks (3 x 5 inches) “I get out thoughts on the bus, so I can be there for my kids when I get home” 
    3. The quirky “Wreck this Journal
    4. A variety of themed ideas were recommended: religious or spiritual journals, humorous journals, artsy journals, and even one-line-a-day journals for those who really don’t want to write much!
  5. Be aware of signs that you need real help. 
    The above suggestions are simple, “starter” ways to think about self-care. However - be aware of when you are heading for burnout or mental distress. Are you experiencing excessive emotions, fatigue, irritability, sleeping/eating issues or signs of depression? If so, it is time to reach out to the mental health resources available to you. Talk to a friend, colleague or supervisor if you are not sure where to start.

These are some simple self-care starters. Please share your ideas with us at ELNEC so we can help each other stay strong!

Remember: A Voice for Nursing is a Voice for Patient Focused Care! 

Dorothy Wholihan, DNP, AGPCNP-BC, ACHPN, FPCN, FAAN
Clinical Associate Professor
Director: Palliative Care Specialty Program
NYU Meyers College of Nursing

Part 4: After the Surge: How are we doing?

June 26, 2020

While COVID cases continue to climb in some parts of the nation, other areas are recovering from hard hit surge activity. Many areas are seeing COVID admissions and death rates decrease. Hospitals are starting to return to previous organizational structures and functions, as they start to resume elective procedures and normal operations.

But what are “normal operations” anymore? The term “new normal” is used extensively to describe this post-surge environment. A new normal will involve continued masking and social distancing, but what does it mean specifically for nursing?

Many nurses in previously hard-hit areas are having some trouble defining this time: “I guess it is a breather- but not really” say some. They feel “not really free yet” and report continuing low levels of upheaval. Mandatory floating to different units continues, as volunteers and travel nurses move on, and staffing has not yet recovered. “On edge” is still a common descriptor. Even if the sense of emergency may have passed, the future of this pandemic is still uncertain. As an educator attempting to arrange the return of graduate students to clinical practicum work, I have been told by some preceptors: “No students yet – we are busy preparing for the second wave.”

How can nurses adapt to this still unbalanced “new normal”? Some suggestions emerge from interviews with practicing nurses:

  1. Stop and breathe!  Force yourself to slow down, even if you can’t totally relax.
  2. Be cautiously optimistic. As nurses, we may look at every passerby without a mask and think, “oh boy – it’s only a matter of time…” Balance every negative worry with positive thoughts. 
  3. Continue to decrease media time. Once nurse reports, “no COVID after 8 pm!”
  4. Take time to re-connect: with friends (maybe non-nurse friends who won’t share war stories) hobbies, exercise - all the things you may have missed while in crisis mode. Those of us in palliative care know that increased sense of appreciation for life that you feel when you work with people facing death, and this may be heightened at this time. Allow yourself to feel gratitude for the blessings you may have once taken for granted. 
  5. Congratulate yourself - and be proud! You ARE a hero- call yourself one! Say it out loud! 
    Use this leverage – you may never have a better opportunity. Discuss with management any ongoing needs of nurses in your organization. Leaders may be more open now, when we have public and institutional gratitude for hard work well done.
  6. What about the grieving? I hear mixed reports from nurses: some are taking advantage of therapy and mental or spiritual resources to work through the toll of so much death.  Some are still repressing, and some connect with their inner feelings “off and on.”  Many are deferring processing COVID trauma in the face of our current despair over the widespread protests against the evils of racism in our country. Wherever you fall on this continuum, make your process deliberate. Know that we are all affected, and that processing these feelings in some way is an essential step towards wellness.

And so, the new normal will provide many challenges. New nursing responsibilities like increased routine testing of patients and staff may continue to tax our staffing resources. A second surge may be in our future. Returning patients may be sicker than ever before, since underlying health conditions have been ignored and undertreated.

I recently polled a group of nurses to cite one word to express how they survived the surge: “ teamwork,”  “resilience,”  “compassion,” “gratitude” and “will power” were all mentioned. These are words of strength and humility bound together.  This is the essence of nursing. 

Remember: A Voice for Nursing is a Voice for Patient Focused Care! 

Dorothy Wholihan, DNP, AGPCNP-BC, ACHPN, FPCN, FAAN
Clinical Associate Professor
Director: Palliative Care Specialty Program
NYU Meyers College of Nursing