Palliative Care and ICU

Siobhan Bell, RN, BScN, MN

When people think about an intensive care unit (ICU), they usually picture the beeping and humming sounds of machines.  They picture nurses, doctors and other health care providers doing a dance that is going to fix or save their loved one.  While in many cases this is true, there is the other side to the ICU.  The side where the dance is the dance of comfort.  The dance that always ends in death.  The goal of this dance is to bring the end for the patient and their loved ones, in a way that we are providing comfort and the opportunities for goodbye’s.

In the ICU, we have hundreds of machines, medications and protocol’s meant to save someone’s life. In the last decade we have been exploring how to utilize all of these machines and medications, in a way that can help bring comfort in death instead of support living at all cost.  What can we do, or in some cases not do, that will help a patient to die in comfort is the question that we ask patients, their families and ourselves.

There is a misconception among patients and families that patients do not feel pain when they are in the ICU.  When in fact, every intervention, test and movement causes pain.  While we have access to many medications to alleviate pain, those same medications also can create challenges with breathing and assessing their neurological status.  They have side effects on their liver, kidneys and overall have side effects that can challenge our ability to keep them alive.  We use these pain medications to the maximum of their ability to control pain, while trying to keep the balance between pain relief and detrimental side effects.

All of this work comes at an emotional cost for Intensive care nurses.  Providing comfort and understanding to the family and to the patient requires selflessness.  Doing this over and over again can lead to being emotionally exhausted.  It is important when we are looking at plans and protocols to assist in the dying process and support of the patient and their families, that we also look at the support systems in place for the care givers such as nurses.  Support that is automatically activated and does not wait for the nurse to ask for help.  A check-in, shoulder to cry on and a chance to grieve as well.  The support should be followed by the ability to have this nurse assigned to a non-palliative or non-end of life patient for the next few shifts.  Allowing the nurse to re-ground herself emotionally.

“My experience in ICU and caring for people dying in ICU has led me to be a staunch advocate for palliation and the creation of palliative care protocols that support patients, their families and the healthcare team providing the care.”

My experience in ICU and caring for people dying in ICU has led me to be a staunch advocate for palliation and the creation of palliative care protocols that support patients, their families and the healthcare team providing the care.  I think that we have come a long way in our ability to support the dying process in the Intensive care units.  However, I think that there is still much work to be done.  There is an incredible need for more nurses trained and educated in palliation to work within critical care areas. There is also a need for them to work with the health care providers and families in the critical care areas to develop deeper understandings of the support required and education that is needed to make informed decisions.  Nurses are uniquely able to describe the step by step process of what the dying within a hospital setting, or specifically within an ICU will look, smell and potentially feel like.  This can bring great comfort to families and patients when they are able to anticipate the process with all their senses.

It is my hope and goal within my nursing career to continue to advocate for the continued education and support of nurses in all areas.  To continue to advocate for nurses to become more in touch with the needs of families and patients with regards to palliative end of life care and specifically with the discussions that are necessary for planning care at the end of life.

As an ICU nurse it has been my privilege to care for people who fight for their life as well as care for people who are dying.  The dying process and the care needed is just as intricate as trying to keep someone alive.  One patient in particular stands out for me, I will call her Alice.  Caring for Alice gave me the extraordinary opportunity to experience how important explaining the palliative process with all my senses was to patients and families.

Alice might have been 22 in chronological age, but she was 4-5 years old in developmental capacity.  This meant many things.  It meant that she showed love, fear and pain in the ways that a child would.  Her parents had fought for many years to give her the best and most normal life they could.  It was evident that they had succeeded.  Alice was a bright, loving and engaged young woman that everyone adored.  Her siblings loved and admired her for the courage and compassion that she showed to everyone, every day.  Alice demonstrated her ability to love without reserve.

I had the privilege to care for Alice a number of times when she was admitted to our ICU.  On her last admission, it was evident that the Alice we knew was tired and very ill.  Shortly after admission, she slipped into a coma.  Alice was put on a ventilator and we were assisting her organs to keep her alive with multiple medications and machines.

Alice’s family seemed on edge.  Unusually solemn and almost angry.  On one night in particular, Alice’s mother was assisting me with turning her daughter.  She broke down in tears mid turn.  We finished the turn before I went to hold her mother while she sobbed.  When she could talk, I listened.  What I heard was that they did not want to see Alice suffer anymore.  It was evident to them that she was in pain and that it was extremely unlikely that she would recover from this illness.  She just didn’t know how she would “push the button” and see her die.  This is when I realized that they did not know.  They didn’t understand….and this was my fault.  I had not prepared them.  I had not told them what it could be.  At that moment I realized that my job was not just to care, but to explain and describe what everything could look like and feel like if we chose a different path.  When her husband returned, I left to document and think about what I could say.  When I returned to check on them the parents looked solemn but determined.  Alice’s Dad looked me in the eye and said “Enough, she has had enough”.  I nodded.  I was too choked up with tears to speak.  I was in awe of the strength and courage that those words would take to express.  I left and arranged for the intensivist and ethicist to speak with the family.  Thankfully that meeting was quickly arranged.

After the meeting, Alice’s parents still seemed concerned.  I had thought the physician and the ethicist had explained the options well.  When I went in to speak to the parents about timing, they seemed confused.  I asked if everything was ok.  Alice’s father said, “We don’t understand, aren’t you going to push a button to turn everything off, or unplug something”.  I realized that they really didn’t understand the process still.  I sat down and had Alice’s parent sit with me.  We sat at Alice’s bedside.

I took Alice’s hand as I spoke to them, so that she could be a part of the conversation.  I explained that in the next few hours, I was going to give Alice a bath and change her pajamas.  Then the Respiratory Therapist was going to help me take the breathing tube out of her mouth.  We (her parents and I) were going to watch carefully to make sure that she was comfortable. Then I was going to give her medications to keep her comfortable.  I was also going to give her another medication to help dry up the secretions that were in her throat that may make her uncomfortable.

I described how I would turn off the monitoring machines and remove the machines from the room (except for the IV machine which I was going to use for giving medications to keep her comfortable). I described the kind of breathing and the sounds that she might make after the breathing tube was removed. I described all that we  would do  to keep her comfortable, such as keeping her mouth clean and moist, turning her frequently, talking to her, playing music that she loved and keeping her warm and dry.  We discussed their goals, which was that she would look and feel peaceful and comfortable.  We would keep her favorite quilt wrapped around her during and following death. We also determined that her teddy would accompany her to the morgue and I promised that I would ensure that her quilt and teddy were with her at all times until the funeral home picked her up. After our discussion, her parents took a deep breath and seemed at peace.

In reflecting on those moments, I realized that my most important job was not the physical care of the patient, but the emotional preparation of the patient and their families.  I am forever grateful to Alice and her parents for allowing me to experience their love as a family and for the growth as a nurse and human being that this experience brought to me.

Siobhan Bell, Ontario