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Being Present for the Dying Patient



Definitions:

  • Being wholly available

  • Intuitively knowing or sensing someone’s needs and being physically available in a helping way


Key Elements of Nursing Presence:

  • Attentiveness- In the moment with the patient and family. Not allowing other thoughts to come in. Focus on verbal and nonverbal messages. Pay full attention to the patient as a unique person.


  • Accountability- Putting your own power on the sidelines. What is right for the patient and families from their viewpoint, not your own or what is customary. Willingness to learn from patients and families. Intentional about committing self and time to be present.


  • Active Listening- Slow your mind to your ear’s listening. It is an art of creating silences in yourself so that you can better hear others. Allow patients to tell their stories without judging or giving advice. It is working to hear the meaning behind the words. Some tips for active listening:

    • Organize the environment to eliminate distractions/ interruptions

    • Use eye contact/touch if culturally appropriate

    • Avoid close-ended questions (Yes or No)

    • Normal tone unless pt heard of hearing

    • Communicate at same height if possible (Sit in a chair at the bedside)

    • Clarify and summarize what the patient says to ensure you understand correctly


  • Openness- Acknowledge and develop your own authentic self, your own feelings about death and dying, as well as areas of discomfort and not knowing what to say or do.

    • Being open to a shared situation (Patient-Nurse)

    • Allows for growth and connection

    • Recognize own limitations, how your behaviors affect others.

    • “Professional” or reaction to discomfort how it can come off as distant or disconnected. Allow yourself to truly feel what is going on.

    • Being open is humbling and allows you to truly surrender to the situation.


  • Sensitivity- Being present allows you to be sensitive to the patient and families needs which could lead to a better understanding and therefore better nursing judgments.

    • The focus is not on the tasks but instead on being sensitive to what the patient and family is experiencing in that moment and time.  There is no attempt to control or change it.

To be present you must have good self-awareness and be able to be vulnerable to another person.


Courage, Empathy and Vulnerability:

Courage is needed to be present and attentive to what the patient is experiencing through their dying process. It requires being uncomfortable with your own thoughts of death and dying but yet keeping your focus on the patient and their experience. It allows you to be comfortable with silence.

Empathy is having the awareness and presence to understand the experience the patient is going through but also knowing that understanding is limited and they will not fully know the experience of the dying person. To do this you must be vulnerable and have courage.

Empathy is different from sympathy in that sympathetic nurses still attempt to control or fix the situation where the empathetic nurse allows it to just be and the patient has control of their experience.


Helping Family Members to be Present


Help them understand that listening may be as important as doing. Silence can also be meaningful and spending time with their dying relative is important. They may also need encouragement to look for their own rest and care. Provide opportunities for them as much as possible to do so. Also realize you may need to be there to help with feelings of guilt or anger if they miss the moment their loved one passes.


Being present takes practice. It makes one feel vulnerable and open to allowing a patient into their world, to open themselves to the patient in order to be truly present with them. This is a skill you can practice in every day life, an art of mindfulness and presence.


Some nurses will struggle with this as wanting to maintain professional boundaries especially during a very significant and sensitive event such as death.

  • May not feel like we are “doing” or “fixing” something

  • We are however, allowing our patients and their families to “fix” their experiences by being present.

  • Patients and families may come to a new understanding of the dying process that involves acceptance, peace, closure, and meaningful communication.

  • There may be tension while striving to be present.

    • Our meaning of self may be challenged

    • Our roles switch from being the experts to allowing the patients to guide us

    • Reflect on those inner conflicts of being present vs maintaining appropriate boundaries (These are different for everyone).


Ethical Practice in Being Present

How can I be present for dying patients and families when there are many demands for my time and attention?

  • What should I value?

    • Autonomy of others

    • Importance of all aspects of care- physical, psychosocial, and spiritual

    • Knowledge and contribution of health team members

    • Uniqueness of each person- patient, family members, staff, providers

  • What should I be?

    • Compassionate

    • Authentic

    • Competent

    • A professional who maintains confidentiality and appropriate boundaries.

  • What should I do?

    • Shift power of one of an expert to one of an observer/ guest

    • Focus on the patient

    • Let go of trying to “fix”

    • Plan strategies and ways to develop “being present” skills

Nurses’ Stories


Attentiveness- Focus on the patient and family every time you enter the room


An experienced home care hospice nurse observed

I learned my lesson the day I walked into the home of a dying woman. Her daughter was caring for her and in obvious distress over her mother’s condition. While I concentrated on the patient- taking her blood pressure, assessing her lungs, checking her bladder for distention- the daughter hovered. Neither of us noticed the daughter’s two-year-old in the background until he started choking on a button. We were able to get it dislodged, but after that, whenever I walked into a home, I paid attention to all the family members.


Another home care hospice nurse explained how she gives her full attention to patients and family members:


To symbolize the importance of being present with a patient and his or her family and to assume my given role,  it was helpful for me to visualize the symbolic act of removing my shoes at the threshold of my patient’s door as well as removing my hat, coat, and so forth. This reminded me that I was a guest in my patient’s home and to visualize my professional service to my patient.



Accountability- Thinking about what is right for a patient and family from their point of view and being willing to learn from them.


A pediatric oncology nurse tells the story of a young girl with leukemia:


All the tests looked good and the doctors wanted to discharge her to home. No one, including me, was listening to the little girl who kept saying, “Something is wrong. I know something is wrong.” Just as we were getting her ready to be discharged, she collapsed with peritonitis. She knew and we weren’t listening.


Sensitivity, Openness, and Active Listening- Be aware of that patient’s and family’s experience in that moment in time. Listen carefully to what they say and what they understand.


A palliative care nurse recalled her experience with a 40 year old patient and his wife in a teaching hospital. He had advanced testicular cancer with many complications. She stayed with the patient and his wife through a conference with the oncologist.


The oncologist stood at the foot of the bed and talked down to the patient. He explained in highly technical terms all the treatment possibilities. The patient’s wife listened attentively. After the doctor finished his speech, he asked “Any questions?” No one said anything, so the doctor left the room. After he left, I sat quietly with them for a few moments. After a minute or two of silence, I asked, “Do you understand what’s going on here?” The wife looked at me with tears in her eyes and asked, “Does this mean he can go home? He really wants to go home.” Ever since then, I have been very aware of how easy it is for us to put up a barrier in difficult situations by using technical terms and by lecturing rather than by listening.  


Key Points:

  • Take time to center yourself: Focus on the patient and family. Clear your mind and allow your attention to only be on them.


  • Be aware of your physical presence and your physical surroundings:  Some nurses “hide” behind their paperwork or talk to the patient at the foot of the bed. Make an effort to leave your charting at the door when you go in to see a dying patient and sit at the head of the bed with you speak to them.


  • Be comfortable with silence: Some nurses carry tissues with them and just sit with the patient and allow them to cry. They may even cry some with them.


  • Listen to what patients and families are saying:  Sometimes it’s hard to really listen, especially when you are really busy. Take 5 minutes to recenter yourself if you notice this even if it is sitting with the patient instead of worrying if their sheets are tucked in correctly.


  • Take time to care for yourself:  You can’t be all things to all people. Reflect and debrief with your team members on these opportunities to be caring for hospice and end of life patients. Allow yourself to grieve and take a break if necessary. Be kind to yourself and listen to what your body tells you.