At some point in your nursing career, you will encounter a patient who is dying. Care for that patient is multi-dimensional and involves not only the patient but the family. Nurses must be skilled clinicians, advocates and above all, guides for patients and families. Here are ten things you need to know.
Patients and Families Trust You
Honest communication is important when caring for a dying patient. Using open phrases such as “Tell me what you know about your illness,” helps guide patients through difficult discussions. Emphasizing what can be done, rather than what can’t be done instills trust and confidence. Use words such as “We will do everything we can to keep you comfortable,” and “I’ll be here for you.”
Advance Directives are Your Friend
Encourage patients and families to talk about what kind of care they would like at the end-of-life. Questions such as “Have you ever told your family what you would want if you couldn’t speak for yourself?” can open up and important conversation. More importantly, have your own discussion with your family.
Pain and Symptom Management are Both Arts and Skills
Nurses need to be skilled in both assessing pain and symptoms and intervening to assure the patient is comfortable. The skill is in knowing how to intervene, the art is in understanding the patient’s goals. For example, if a patient rates pain as a nine out of ten (worst imaginable) the next question is, “Where would you like it to be?” Some patients prefer to be more sedated, others prefer a higher level of pain in order to be more alert.
It’s Not Easy to Predict
Studies have shown that even highly trained hospice nurses cannot accurately predict when someone will die. The nursing art and skill is in knowing the signs indicating when death is near and guiding the patient and family. Saying “good-bye” too soon is better than not saying “good-bye” at all.
Dying Patients Need You to Advocate for Them
Especially in an acute care setting, treatment is often aggressive and invasive. Patients and families are swept along with little understanding of the reasons for the tests and procedures. You can advocate by asking questions such as “Will this enhance my patient’s well-being?”
Suffering can manifest itself in many ways including restlessness, inability to sleep, depression or lethargy. The best way to assess this is to ask. “Are you suffering?” Oftentimes the simple act of acknowledging a patient’s suffering is an effective intervention.
Chronic Illness and Dementia Eventually Become Terminal
While people are living longer and better with chronic illnesses ranging from congestive heart failure to Alzheimer’s dementia, these conditions will eventually become fatal. If you are caring for patients with chronic illnesses look for signs that the prognosis is life-limiting. Common signs include frequent hospitalizations and emergency room visits, falls and loss of ability to perform activities of daily living.
Grief Should Be Acknowledged
At the time of death, your nursing role includes acknowledging the loss. This means allowing time for the family to be with the loved one, expressing condolences such as, “I am sorry for your loss,” or simply being quietly present for the family.
Hospice is the Gold Standard for End of Life Care
Hospice is designed for patients who have a life expectancy of six months or less and is mainly provided in the home by an interdisciplinary team including nurses, social workers and chaplains. If you are caring for a patient who appears to have a life-limiting condition, ask, “Is this patient sick enough to die? Would I be surprised if he/she was still alive in six months?” If the answer is yes, it’s time to consider hospice.
Take Care of Yourself
The best way that you can care for any patient is to care for yourself. This means maintaining a work/life balance. As a seasoned hospice nurse once said, “When I reach the point where I cannot hear another sad story, I know it’s time for me to set my work aside, go for a long walk and appreciate my family and my friends.”
About the author
Linda Norlander RN, BSN, MS is the Director of Clinical Services for CHI Franciscan Hospice and Palliative Care in Tacoma, Washington. She is the author of several books on end-of-life care and has published articles on topics ranging from hospice care to advance care planning.