Culjis MJ. The experience of older men with heart failure who are receiving palliative care [dissertation]. University of California, San Francisco; 2013 [cited 2021 Jul 4]. Available from: https://escholarship.org/uc/item/3tr400q2 35
Finding 1	Told or learned of HF was most often told through an event (U)
Illustration	“I was trying to climb (hiking) and I didn’t make it. I sat down and rested, when I got down, I went and saw my doctor and he turned around and sent me to a cardiologist … and he put me in the hospital (received valve replacement, beginning of HF).”(p.61)
Finding 2	Older men more than younger older men found it difficult to recall the exact onset of the illness (U)
Illustration	“That was August 6, 2003. I didn’t know none of us noticed I had a heart attack until I got to the hospital. But anyway prior to call you know 911 … I was having breathing problems … it was the very first time to be diagnosed being uh you know, but it was heart failure.”(p.63)
Finding 3	Not able to determine the frequency, severity or how much a symptom bothered them (U)
Illustration	“Bouncing around symptoms between fatigue, breathlessness and limited physical ability.”(p.65)
Finding 4	Breathlessness and fatigue are also associated with other chronic illnesses making differentiation of symptoms difficult if not impossible (U)
Illustration	“I have shortness of breath now, but that’s from this morning I kind of overdid it and then I was out of breath, that from the COPD … they are not sure if that shortness of breath is from the heart or the lungs.”(p.66)
Finding 5	How men manage increasing breathlessness (U)
Illustration	“I usually come in here and sit down and rest. And when it (breathlessness) quiets down a little bit, I come in here and take a nap. Let my heart rest … happens just about every day.”(p.71)
Finding 6	Inability to judge when to call the health care providers (U)
Illustration	“And well I was just gasping for air and I couldn’t breathe and finally after a few hours, I thought I was going to die because it was getting worse and worse. And finally I got a doctor in there (ED) to look at me and they gave me … pills … stuff they’d give to go to the bathroom all the time.”(p.74)
Finding 7	Delays in calling 911 … A 911 call resulted in costs which caused them to rethink when to call for assistance (U)
Illustration	“So what I am thinking about doing the next time when I think I am in trouble. I’m going to pretend I’m not and I’m not going to call them (911). Because I found that they go to Community Hospital, and I can go there by cab. By the condition of what would be anywhere from $14 to $18 cab fare to go to the same place. Or it could be thousands of dollars if you call 911.”(p.74)
Finding 8	Medication management is left to the men to order, organize and take at the correct times. Medication difficulties abound (U)
Illustration	“Well I take them in 3 doses, like 15 in the morning, 5 at noon, then the balance at dinner, then he (son) was pretty abrupt. I missed a couple of days and he (son) came around and said you miss your pills you die, just like that.”(p.76)
Finding 9	As a man becomes more impaired by fatigue and breathlessness, the caregiver, family member or the nurse from the palliative care team begins to fill medication boxes (U)
Illustration	“So I got to get somebody like a nurse to order them for me or I won’t get them and that’s alright too because I’m tired of taking pills anyway.”(p.77)
Finding 10	More dependent on “family” outside the home … increasing reliance on friends and neighbors (U)
Illustration	“When I went to the hospital, my neighbor never missed a day, and he was out there visiting me … If they don’t see one or both of us every day, they are right at the door bell to check.”(p.84)
Finding 11	In spite of frequent hospitalizations and a limited quality of life, allowing for a natural death is unthinkable in the presence of breathlessness (U)
Illustration	“When I have difficulty breathing … Yeah that’s really difficult to put up with because you imagine all sorts of things. I am not afraid of dying, I am not afraid of dying, every body’s got to do it, but when it approaches you that close where you can’t catch your breath, no matter what you say about dying, it gives you a creepy feeling. Sometimes I wake her up, I say wake up come on wake up stay out here with me.”(p.86)
Finding 12	Regardless of the availability of medications and equipment to support management of breathlessness at home, men found it difficult to do what they considered “nothing” (U)
Illustration	“My cardiologist now, the couple of visits he said I have done everything I have done for you now and ah, just bide your time. He says if I was you I would stick to the DNR and once you are down, you’re down and out … But the nurse and somebody else said, when I give you the last chance, if you fall and pass out, give them 24 or 48 or 72 hours to see if they can do anything to prolong you … my wife doesn’t want me to (DNR).”(p.87)
Finding 13	Health care providers were perceived as providing uncertainty in how to proceed with care (U)
Illustration	“The doctors don’t know. They don’t have a clue right now. I went to the cardiologist about 6 weeks ago, and he said ‘I think I have failed you.’ Very seldom you hear a statement like that from a doctor. He felt that we were not going the right direction of what I needed. But who knows, everyone makes mistakes. … I had 3 cardiologists in my room down there for 3 weeks. They can’t agree with each other.”(p.88-89)
Finding 14	The sense of time had become less significant (U)
Illustration	“I eat whenever I feel like I’m hungry. Many days go by where I never turn the TV on. I don’t wear a watch anymore, because I don’t want to know what time it is. When I feel hungry, I go and make myself something to eat. They don’t understand how I can live that way.”(p.94)
Finding 15	Reflective moments about their life and overall satisfaction about their lives in general (U)
Illustration	“… I’ve had a good life. Growing up through the depression, times when my father made great big wages and then down to nothing. My father made big money when things were good and when the market crashed … I was lucky. I got a wonderful life.”(p.96)
Finding 16	The meaning of HF during this turning point was primarily focused on their ability to retain independence (U)
Illustration	“Disability not being able to do things I did before, the limitations.”(p.63)
Finding 17	Transition or turning point in which men recognize their life was changed at some point, not always immediately by the diagnosis (U)
Illustration	“I was trying to climb (hiking) and I didn’t make it. I sat down and rested, when I got down, I went and saw my doctor and he turned around and sent me to a cardiologist … and he put me in the hospital (received valve replacement, beginning of HF.”(p.61)

U, unequivocal; COPD, chronic obstructive pulmonary disease; DNR, do not resuscitate; ED, emergency department; HF, heart failure.