Palliative care in nursing

[Simonesays, BSN, RN]

Yesterday I was caring for a patient who had end-stage cancer. She had recently undergone chemotherapy which ended up causing internal bleeding. After days of failed transfusions and various treatments, the patient was left writhing in pain often (due to severe bladder spasms) and comfort care seemed to be the next logical step. She was dying.

Our palliative team started to follow her and wrote her pain management orders. This meant that she her pain was well-controlled but she was comatose. The family (very loving and involved) had not come to terms with her prognosis. They wanted her to remain as a DNR (no cpr, no intubation) but full medical-management patient. This meant continuing to assess vital signs, giving her antibiotic treatments, and running IV fluids, among other things.

After a lengthy discussion with the palliative team, and through my interactions with the patient's family, I decided to focus my care on keeping the patient comfortable. I made her room quiet and peaceful. I lowered her side-rail and set up a chair for the patient's husband to sit in beside her and hold her hand. He asked if she could hear him. I told him that I didn't know for sure but she responded to having him around. I told him he could talk to her if he wanted and it was okay to just sit with her and hold her hand. He is in the early stages of dementia and didn't fully grasp what was happening. Each time I took a set of vitals, he would ask, "Oh! That's a good thing, isn't it?" I found it heartbreaking to try to gently bring him back to the reality of the situation saying things like, "She seems really comfortable right now and her pain seems to be under control." I felt like I was giving him a false sense of hope each this happened.

How do you provide hope and comfort to your patients/their families in situations like this without fostering unrealistic expectations? How do you promote death with dignity for actively palliative patients? Insight, personal experiences, and advice are much appreciated.

[sistrmoon, BSN, RN]

I'm an Onc nurse and have had many palliative patients. It's definitely more challenging having a loved one with early dementia who cannot really grasp your teaching or forgets it a little later. Even family members just deep in denial can be similar though. It sounds like you did everything right. Most palliative patients I've had are on comfort care which equals no vitals, which is a blessing. That way there can be no hope or dread derived from the numbers. If a family member makes a comment that shows they are still in denial, I gently try to bring them back to the reality of the situation and let them know what to expect(breathing patterns, etc) so they aren't surprised by these. I also let them know there is no true way to know when their loved one will pass. I've had some I was sure would go on my shift hang on for days. I've had many a comfort care patient "wait" until their loved ones went home for the night or left to grab coffee before passing.

[Red Kryptonite]

I've had patients who are Cheyne-Stoking and mottled up to their hips, yet their family members are still thoroughly shocked when they die. Denial ain't just a river in Egypt, and it's an insanely powerful thing. Dementia adds a whole other layer.

I've learned that sometimes you just have to accept that you are not going to break through some people's emotional barriers. All you can do is remain professional, compassionately truthful, and continue with your job. Nature will school them fast and they won't be able to mentally wiggle out of that.

Denial from family members is frustrating but doesn't really hurt anyone unless they start brawling at bedside or trying to shove French fries down the throat of an unresponsive patient. (Yes, I've seen both.) The hardest part of dealing with it is when you have to talk them off the ledge of trying to restart aggressive treatment you know is futile and will only cause suffering, or when they start accusing hospice workers of starving their loved ones. Most of them respond well to gentle education. Some people will never be satisfied with anything, and there is nothing you can do then except focus on the patient and do your job well.

[TakeTwoAspirin, MSN, RN, APRN]

I'm curious as to why you were taking vital signs on a patient who was DNR? Once a patient is "comfort care" with DNR orders we stop doing vital signs because, really, what difference does it make when we are not going to do anything like CPR? As you noted with your patient's spouse, it just gives them something to fret about. When a patient of mine is actively dying I take out all the monitors and medical stuff in the room and do what you did; make it more comfortable and calming for the visitors/family.

[PA_RN87, BSN, MSN, RN, APRN]

I'm curious as to why you were taking vital signs on a patient who was DNR? Once a patient is "comfort care" with DNR orders we stop doing vital signs because, really, what difference does it make when we are not going to do anything like CPR? As you noted with your patient's spouse, it just gives them something to fret about. When a patient of mine is actively dying I take out all the monitors and medical stuff in the room and do what you did; make it more comfortable and calming for the visitors/family.

We do vital signs on dying patient prn, and on family request if they are present and would like them done. Sometimes the first signs of the final descent are in the vital signs, and if family isn't present it may be the first indicator that it's time to call the family in. I actually just had a patient pass last night, who went from responding to simple questions to death in 4 or 5 hours, and was actually originally going to be discharged to the nursing home earlier that day. There is no straight answer for when and how often to do vital signs on a dying patient, but at least on my unit, we do them for a reason if appropriate.

[Simonesays, BSN, RN]

Thanks so much for your thoughtful replies. It's always helpful to hear the perspectives of others and learn from their experiences.

@TakeTwoAspirin: "The family (very loving and involved) had not come to terms with her prognosis. They wanted her to remain as a DNR (no cpr, no intubation) but full medical-management patient." One of the challenges that I had in caring for this patient was that she was not yet comfort care (while it did seem to be the next step in her plan of care, the medical team had not yet been able to convince the family this was the best course of action). For us, there are different levels of DNR. The family still wanted this patient to have her vital signs taken, receive IV fluids, receive IV antibiotics, etc. And I agree with your statement about a DNR patient who is also comfort care- I would absolutely not have done any of these assessments/interventions if this had been the patient's status. It takes away from the family's time with their loved one. Although, as PA_RN87 said, if the family were not present, it would be useful to monitor the patients resps, pattern of breathing, etc. to alert the family to come back (if they wanted to) when the patient's death seemed imminent.

[tyvin, BSN, RN]

Don't bother that poor women with taking her b/p. You tell the family it's hurting her; the family can't dictate care. The family can request and present their wishes but there comes a point when you need to put your foot down for the patient. Is her comfort not as important as the families "uninformed wishes?" Educate, educate...I am a hospice nurse for many years; taking the b/p when passing can be cruel; there are other things to do that can assess the patients condition without having to expose her to an arm cuff which in most cases is painful if not very uncomfortable. Let the women pass in peace; doesn't matter what her status is. Get the doc to write an order for prn b/p

As for her being able to hear the husband; of course she can! Have a little faith.