| Clinical Experience |
1.Through clinical experience nurses become persistent advocates & educators |
1A. Nurse learns to persist in communicating with patient, family, interdisciplinary team |
1Ai. Advocate for patient |
“You have to advocate for that patient regardless, I think…as a nurse you’re here for the patient. It can be a struggle, but you’ve got to look at it that way.” FG1 (471–473)“I feel like as a nurse…being an advocate for that patient…I think as a nurse we really have that role…We have a duty to say something at that point to their family.” FG2 (710–717) |
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1Aii. Persist in educating patient, family, interdisciplinary team |
“You just have to paint a picture…this is what’s going on with your loved one and… there are choices.” FG1 (249–250)“Education just needs to be provided (to the patient) that you have a diagnosis…this is what is going on with you; what do you want?” FG2 (160–162) |
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1Aiii. Using interdisciplinary team |
“The great thing about long-term care is we have many resources here…social workers, doctors, chaplains, nurses. Getting everybody involved and being persistent and consistent is helpful in reaching the goal.” FG1 (467–469)“Nurses, nurse managers, nurse practitioner, social worker, everybody works together.” FG1 (488–489) |
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1Aiv. Initiating discussions with patient, family, interprofessional team |
“It’s my job to start the conversation and at least get the nurse practitioner and families talking.” FG2 (298–301)“Get others involved…whoever we feel is going to educate them in a way that they can make the decision that they want to. It might be getting another provider…the chaplain…a nurse that they really like. It’s whoever we feel is going to get through to them.” FG2 (565–568) |
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1Av. Employing multiple communication strategies to clarify patient EOL care preferences |
“There’s not a recipe that fits for everybody. So if it works for some people, great, and if they find that it’s not their cup of tea, then you can find another solution…another avenue to pursue.” FG1 (186–187)“Just keep talking and talking. Communication is a must, obviously, the family and everybody. Eventually, it happens, but you never know when it’s going to happen, if you’re going to make that decision tomorrow. Maybe a month from now. There’s a lot of factors.” FG1 (552–544) |
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2. Through experience, nurses learn to use consistency, contextual differences & patients’ nonverbal communication to improve EOL care communication |
2A. Nurse has to become a consistent communicator |
2Ai. Communicates patient’s evolving prognosis, care plan |
“I just go through each thing and explain exactly what it is, so that they can see a picture in their minds, so that they truly understand…what I’m talking about and what they’re checking on the piece of paper.” FG2 (816–818)“At the end of the day…from experience, we do know when somebody is declining. We do know from experience. We do know. After being with the resident for a while, we start knowing that this person is declining very fast. They might need hospice, need comfort care.” FG2 (887–891) |
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2Aii. Continue to be present to patient & family, skillfully practicing deep listening with patients |
“It takes a while for us to get to know what is important to them and what is not. The day of admitting them or when they’re writing that paper doesn’t help you know what’s important to them. It takes you doing cares for them for you to know.” FG2 (860–862)“In nursing, listening…happens not even almost in the ear but in the heart.” FG1 (593) |
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2Aiii. Nurse attends to patient’s spiritual dimension in EOL care |
“Long-term care and aging is spiritual.” FG1 (353)“Part of nursing is caring for the whole person, including the spiritual part of the person.” FG1 (707–708) |
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2B. Nurse becomes aware of patient’s nonverbal communication to assess EOL care prognosis and preferences |
2Bi. Nurse is a keen observer of non-verbal communication |
“We just see it, even if they don’t communicate. It’s the demeanor, the facial expressions, the fatigue, the little things that aren’t said with words, but you can definitely sense it.” FG2 (217–218)“You can see it sometimes. They’re not feeling well. They used to eat themselves and then we have to start feeding them. Then they’re more confused. Granted, they may not be going into the hospital, but I used to talk to them before; suddenly, they’re not talking. We’re seeing things that make sense. They used to be continent but are becoming incontinent…somebody that’s always up and going to activities, all of a sudden they don’t want to go to anything anymore.” FG2 (941–955) |
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2Bii. Patients communicate EOL care preferences through non-verbal behavior, change of condition |
“Even a person with dementia, they still know things that they want or don’t want. ‘Do you want to go to the hospital?’ ‘No.’ They know they don’t want to leave. They want to stay right where they’re at. They don’t want to go anywhere else. I feel like that’s a pretty clear-cut one. They know what they want.” FG2 (661–674)“It’s more behaviors, versus labs and stuff…picking up on the people and knowing the people, versus the labs, because they go to bingo every Friday. Now, all of a sudden, oh, they’re not going this week. ‘Ah, I don’t feel like it.’ …Just the change in their lifestyle and their habits… You see that shift where it’s almost like, you know, sometimes it is one day to the next when they’re just like, ‘I am tired. I want to sleep. I’m just done…Tired of living.’” FG2 (916–944) |
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2C. Nurse aware of LTC contextual differences important to EOL care communication |
2C i. Urban vs. rural differences in LTC EOL care communication |
“I think (in urban LTC) there’s probably less families involved, where a little further north (rural LTC) you got to know the family as well as the resident because they were pretty much there all the time and very involved with a lot of the residents up there. So that makes it a little more difficult here because it’s just the resident. Sometimes they just need that little extra support.” FG2 (378–381) |
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2C ii. TCU vs. AL/SNF/MC |
“With TCU we’re so highly regulated. We have rules that we have to follow, so when somebody comes to TCU we can’t just say, ‘you can think about it and let me know,’ because what happens when 30 minutes later they code and then we have like, ‘what did you do? Did you do what you were supposed to do? Did you have all your paperwork in order? Did you follow the rules?” FG1 (312–317) |
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2C iii. Words & Language matter in EOL care communication |
“People get scared of hospice, that stigma with it, so then we gear it toward, well, ‘how about comfort instead?’ I think people react a little better to that. I think it’s just word choice sometimes.” FG1 (192–195) |
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2C iv. Patient’s cognitive capacity, family dynamics affects for EOL care decision-making |
“I’ve been in a situation where the resident wanted to be comfort and the family did not. That was a difficult issue. We ended up getting an ombudsman involved in that, and that resident did end up going on to hospice.” FG1 (215–217)“I think there was some cognitive issues. She did have some trouble understanding… so that made it a little tough in that situation.” FG1 (453–455) |
| Time |
3. Nurse uses time to assess each patient’s unique EOL care situation, allow patients and families to make decisions |
3A. Nurse needs time to assess patients’ & families’ comprehension, anxiety and EOL experience |
3Ai. Nurse needs time to assess patients’ & families’ spectrum of experience & goals |
“I feel like when I was working on the floor, half the time they didn’t even know what those things were, some residents when you’re asking them, or family members. Then that can stir a whole boat of emotions for people.” FG1 (258–260)“On the floor I’ve seen where people don’t even understand what you’re asking them even…people that didn’t really know or hadn’t thought about it.’” FG1 (270–275) |
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3Aii. Patients & families prognostic comprehension affects EOL care communication |
“It’s very unique to every family, every person that goes through it and what stage they’re at, because some are ready and some it’s a surprise.” FG2 (176–178)“With experience we do know that there’s really nothing we can do, that the system can do, that, at the end of the day they are going to pass. Most of the time the family doesn’t know. That’s their first time of being in that situation.” FG2 (191–193)“It’s not like on TV. I actually had a resident who had CPR done on her, came back. She was revived, came back here; she changed her code status. Immediately. She said, ‘I would never go through that again.’” FG2 (844–849) |
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3B. Patients & families need time for EOL care decision-making |
3Bi. Patients & families need time for decision-making & emotional processing |
“I think it’s important to keep talking, even if you get denial because they might just be denying it to your face, but when you walk out of that room or apartment, I think you’re just putting those seeds in people’s head. Maybe when they’re alone and there’s nobody to talk to, argue to, pretend to or lie to, they can start thinking about, truly, ‘What are my options? What do I want? What is my future?… Eventually, if you keep talking and educating, it gets easier to talk about those things and make decisions and ask questions.” FG1 (425–435)“It took a long time for all those kids to finally be on the same page, to just sign her up for hospice, so she gets added care and support.” FG1 (646–647) |
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3Bii. Patient & family mortality anxiety affects nurses’ communication |
“Until the patients themselves are ready to face mortality issues, until they themselves see that we are mortal beings and we will not last forever…to deal with the aspects of their own mortality, I can’t talk somebody into it. You can lay the groundwork, but until they’re ready to walk on the path, there really isn’t anything that you do, other than support the other family people who really are concerned and want to discuss it” FG1 (376–381)“A lot of families are in denial. It is hard. It is your loved one and you never want to talk about death and them not being here, but it’s a very hard topic to mention that your mother or your father, that figure in your life, that they will not be here someday.” FG1 (246–248) |
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3Biii. Patients & families want to control EOL care decisions over time |
“Control is big, huge. They have to feel like they’re on the steering wheel, that they have the reins…that their voice is being heard from the family and the resident, too.” FG2 (457–460) |
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4. Nurse uses time to educate patients & families about EOL care adjust care plans continuously, develop trust |
4A. Patient & family lack comprehension of EOL care, trust in care system |
4Ai. Patients & families have cultural stigma about hospice |
“A lot of people are unaware of what hospice is and they think this is going to hurry that progression, to essentially, for lack of a better word, kill the patient.” FG2 (156–158)“At that time the family doesn’t get it…they have this notion that hospice is…just going to leave them to die. So they don’t really accept it.” FG2 (195–198) |
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4Aii. Nurse needs time to address patients & families unfamiliar with, or have misperceptions of EOL care |
“They did not know what hospice was and what services they provided. … Just because somebody is on hospice, it doesn’t mean that the person is going to die. You still can have your dad around for as long as his health allows; as long as God allows… It’ll be a better experience for both of you.” FG1 (678–682) |
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“Committing to hospice is pretty terrifying for some individuals because they just don’t know what’s going to happen after that.” FG2 (160–161) |
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4Aiii. Nurse uses time to continuously adjust care plans with patients & families |
“We put these care plans after review of everything and it just depends on what triggers from our assessments that the nurses are doing, of what goes in the care plans. They change daily, what goes in these care plans. It changes daily, care planning does…To say when do you have enough, I think it just depends on in that moment what you’re looking it, because it’s a continually changing thing, the care planning process in and of itself.” FG1 (520–527)“I think your goals as an individual change…. Maybe when they first get here and their health is still good, the goal may be to maintain, to be as well as you can be functionally, spiritually, mentally, and then eventually people start to decline and then your goal changes… Our goal cannot stay the same; it changes with time.” FG1 (529–535) |
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4Aiv. Nurse develops trusting relationships with patient & family to facilitate EOL care communication |
“If you already have some kind of ground and some form of a relationship with them, they’re probably more open to (communication), versus if it’s somebody who doesn’t know me, why would they listen to me.” FG1 (119–121)“I think talking with the family members, and it depends on trust. If they know that you know what you are saying and they trust you they may accept what you say. If… they don’t trust you, they won’t accept what you say… Talk to them from here until tomorrow, they won’t accept.” FG2 (633–638) |
