by Jennifer Forik, MSN, CRNP, ANP-BC

When I am asked what I do for a living, I enthusiastically and proudly say, “I’m a palliative care nurse practitioner!” Unfortunately, I usually do not receive the same upbeat response. I usually am told, “Oh wow, that’s a tough job” or, “Oh, so you care for people at the end of life?” Yes! Isn’t that amazing?  

Palliative care is a type of medical care that helps with symptom management from chronic illnesses, and guides discussions around goals of care with patients. This type of decision-making allows the patients to decide on how they would like to proceed with their medical treatment. Sometimes patients decide that hospice care is the best option for them (Hospice care focuses on the comfort of a chronically ill, terminally ill or seriously ill patient’s pain and symptoms, while to their emotional and spiritual needs). 

So, how hard is it to care for people at the end of their life? The answer, in a nutshell? It’s very hard. Nursing is a calling; nurses are passionate about their profession. There have been several times in my career as a palliative care nurse practitioner that I have sat at the bedside of a dying patient and held their hand until they passed, or until family members were able to make it to the bedside. I’ve had to tell patients that there is no more hope, that they are dying. I have cried with patients; I have shared in their anger about their new diagnoses. This is difficult.  

I was once told by a wonderful hospice nurse, “You only get one chance to die.” These words constantly echo in my head. Sometimes the overwhelming pressure of making sure the patient is comfortable can really sit heavy on your soul. There is an emotional burden that nurses carry from simply empathizing with their patients. We almost internalize patients’ emotions – which does, in my opinion, make us better caregivers, but it’s also a truly Herculean task.  

As nurses, we often must separate our work from our personal life. As personal as we may take a patient’s death, we must also remember that it’s okay to feel and talk about our emotions and how we are affected by the loss.   

Mental health for the patients during this critical time is essential. However, what about their nurse who is consumed by death and dying, sometimes multiple times a day, every day? For those of us who are in the helping profession we often feel that we are not doing enough for the people we help, we question our purpose, and feel guilty that at times, we do not have the answers.  The emotions at end of life, the empathy, the pressure to make death a peaceful experience – this can all be very overwhelming. 

When it all becomes too much, in the medical field we call this compassion fatigue, (sometimes called secondary traumatic stress) which is described as the compounding emotional and physical exhaustion experienced by helping professionals and caregivers exposed to working with those suffering from the consequences of traumatic events.

It is usually experienced in nurses more than any other medical profession, but compassion fatigue and burnout can affect other people, including caregivers, public safety personnel, therapists, social workers, family caregivers and other mental health providers.  Although burnout is similar to compassion fatigue, there are differences. Compassion fatigue and burnout are both a form of stress that can occur anytime, but compassion fatigue usually stems from working with trauma victims whereas burnout happens over a period of time and is normally related to work stress and feeling overworked.

 Signs of compassion fatigue include:

  • Lack of sympathy or empathy for patients
  • Exhaustion  
  • Anger
  • Depression or anxiety
  • Decreased passion for your career
  • Sleep deprivation  
  • Dread coming to work

 Signs of caregiver burnout include:

  • Sleep problems
  • Feeling hopeless
  • Lack of energy
  • Changes in eating habits
  • Becoming irritable, impatient, anxious
  • Difficulty coping with day to day tasks

As a palliative care nurse, the prolonged exposure of listening to clients’ traumatic stories makes one susceptible to compassion fatigue and is not always easily identifiable. Burnout is about being ‘worn out’ and can affect any profession. The impacts of burnout emerge gradually over time and are easily identified to direct links and stressors within the working and personal life. Things that inspire passion, drive and enthusiasm are stripped away as tedious; unpleasant thoughts take over.

If left unresolved, compassion fatigue (and burnout) can affect your work, your family, and eventually your mental wellbeing and physical health.

For those who are experiencing compassion fatigue, stress and/or burnout, it is important to

  • Understand that you are not alone
  • Acknowledge how you are feeling
  • Reach out to others and share your thoughts
  • You may need to break from the situation
  • Seek professional help

Of course, there are other factors to compassion fatigue – like stress, heavy caseloads, or even lack of resources. Is this the cost of caring for patients? I sure hope not.

After we recognize the signs of compassion fatigue, how do we get ourselves out of this rut? Sometimes it may be as simple as taking a mental health day, a week of vacation, any time to step away and rejuvenate. 

The best things to do are try to separate your work life from your personal life. Try to leave work AT work. There may be times the weight is so heavy that there may need to be a refocus and the need to develop healthy habits for ourselves.

Personal life focuses:

  • Find a hobby (gardening, knitting, hiking, etc.)
  • Journal! Get those emotions out on paper
  • Exercise
  • Have a spa day, or a day where you spoil yourself!
  • Talk about your feelings with someone you feel close to
  • Take the time to recognize the signs of emotional fatigue for yourself and develop healthy habits to deal with stress
  • Don’t over-commit! Have work/life balance
  • Debrief with management or with a bereavement counselor  
  • Develop a network of mentors, peers, and staff who understand your feelings and you feel comfortable discussing your emotions with
  • Seek help from a medical professional or psychologist  

We are all human. Emotions affect us, and it may be overbearing. Nurses really love developing connections with their patients and even friendships; that’s why we choose this profession. But it is also important to recognize when WE need help, so we can nurse ourselves back to our patients.  

Ready to add self care to your routine? Here is a list of free or low cost resources in the Philadelphia area.

Fitness

Dilworth Park: free, fitness programs led by top-notch trainers from Optimal Sport Health Clubs 1315 Walnut. Free classes run through October 15. Classes are designed to keep you informed and in shape! 

We Walk PHL: free walking group that meets several times per week at various public parks.

Caregiver Support Group

Free monthly caregiver support groups throughout Philadelphia and the suburbs offer a place to talk to others in similar situations, and to learn coping strategies and information on how to best care for your loved one. For more information, please call 215-371-1369 or e-mail here. 

CARES, a caregiver support program at Lutheran Settlement House. Additional times, locations, and events can be arranged.