Characteristics of Caregivers and Their Corresponding Patients
Caregiver characteristics are summarized in . Most were parents and identified themselves as primary caregivers. Nonparticipants did not differ significantly from participants with regard to age of the patient at death (22.7 years for nonparticipants vs. 24 years for participants, P = 0.90), relationship to the patient (84% of nonparticipants were parents vs. 82% of participants; P = 0.67), or location of the patient’s death (100% in hospital for nonparticipants vs. 81% in hospital for nonparticipants; P = 0.24).
Characteristics of Caregivers Participating in Interviews and Their Corresponding Patients (n = 27 Caregiver-Patient Pairs)
Characteristics of corresponding patients also are summarized in . Most had severe lung disease, with 59% having an average forced expiratory volume in one second (FEV1) below 30% of predicted over the six months preceding death, a cutoff that commonly prompts consideration of referral for lung transplantation. Patients were overall quite debilitated and used numerous disease-specific treatments during the six months preceding death and in the final week of life (). All patients died from respiratory failure related to either advanced CF lung disease (n = 14) or BOS after lung transplantation for CF (n = 13). Average survival after transplant was 4.1 years (range 1.2–10.2 years). Interviews were conducted on an average of 7.5 years (range 1.8–10.9 years) after patient death.
Disease-specific treatments used during last six months and last week of life.
Themes elicited from caregiver responses to questions about symptoms and treatments are presented below and are summarized in .
Themes Elicited From Analysis of Caregiver Responses to Questions About Symptoms and Treatments
Symptoms Experienced by Patients with Advanced CF Lung Disease
As shown in , dyspnea, fatigue, and anorexia were the most commonly reported symptoms in the last week of life, experienced by at least 80% of the patients. Over half of the patients also were reported to have anxiety and pain. There was no difference in frequency or nature of symptoms in patients dying from CF vs. BOS.
Prevalence of symptoms and most distressing symptoms as reported by caregivers.
Dyspnea was reported to be the most distressing symptom for most patients (52%). Typical caregiver descriptions of dyspnea included, “She was having problems breathing all the time” and “The shortness of breath was horrible. If I had to describe it, I would say she practically smothered to death.”
Anxiety was another common and distressing symptom, with nearly 20% of the caregivers reporting that patients had frank panic attacks. Caregivers often alluded to the overlap between dyspnea and anxiety. One stated, “[Patient] was very, very, very agitated, and just couldn’t breathe and was very frustrated.she’s just agitated and just nervous, tense, just real upset about everything. I think the anxiety was the worst symptom.” Another described the intersection of these symptoms by stating, “I think [patient] felt like he wasn’t getting any air. It was like an anxiety attack but he would be registering 97 or 98 [percent oxygen saturation].” In the context of describing a patient’s dyspnea, another caregiver said, “You can understand her anxiety.”
With regard to other symptoms, pain was most often described as localized to the chest, but headache and joint pains were also common. Although fatigue was identified by most caregivers, few remarked specifically on its impact on patient functioning. Anorexia and nausea were also common symptoms, with eating often being described as laborious: “[Patient had] no appetite. None. I would have to beg. In fact, she would eat a little bit and drink her [nutritional supplement] really just to shutme up because I, well I knew she couldn’t survive without it.” Although many patients received tube feedings, few caregivers discussed patient tolerance of this form of nutrition.
When asked about how often physicians asked about distressing symptoms, none of the caregivers felt that inquiries were excessive. A majority (55%) felt the frequency of inquiries was “just right,” with one caregiver stating, “.they would come in to say how is [patient], is she uncomfortable and things like, she’s okay and she’s not in any distress, and, they were just very attentive.” However, 27% felt such inquiry occurred “not often enough,” and 15% did not recall physicians ever asking about distressing symptoms. Symptom assessment for hospitalized patients was commonly described as part of nursing care, with nurses relaying this information to physicians; thus, direct patient-physician communication about symptoms did not always occur. One caregiver recalled, “[Physicians] didn’t ask us. They would ask the nurses.”
For some patients, limitations on symptom assessment were imposed by escalation of care to include mechanical ventilation and the associated need for sedation. One caregiver remarked, “I think she was comfortable. I mean she wasn’t… thrashing around or you know acting like she was in any distress.” Another said, “It seemed like sometimes when the blood pressure would go up or the heart rate would get a little stronger, the nurse may come in and say that she could be in a little bit of pain, but they would try to assure me that she was not in any pain.”
Only 9% of the caregivers reported that overall symptom control was “very good,” with most (71%) describing it as “somewhat good.” The remaining 20% felt symptom control was “somewhat poor” or “very poor.” The predominant theme that emerged concerning symptom control was that medical providers “did the best they could” to manage distressing symptoms. One caregiver said, “For the condition she was in, I think [symptom control] was good. I don’t believe they could have done anything more.” Others noted perceived limitations of medical treatments, stating, “. they controlled what they could with the shortness of breath. Of course you know there was not a lot they could do at that point,” and “[Symptoms] couldn’tbe completely controlled. There were not adequate medications.” Another commented on delays in receiving medications prescribed to alleviate symptoms: “[Symptoms] were controlled pretty well given the system. The system is just slow. There is a long time in between feeling the pain and getting something to relieve it.”
Another pervasive theme was the difficulty of managing distressing symptoms because of the discomfort caused by disease-specific treatments. Chest physiotherapy, which facilitates clearance of lower respiratory secretions, was most often identified as the most burdensome treatment, primarily because it may be painful. Bilevel positive airway pressure (BiPAP), also felt to cause discomfort, was described by one caregiver as follows: “And she could not tolerate the BiPAP. The pressure of it gave her terrible headaches. It was the only time that she said I can’t stand that, I can’t do that.” Many caregivers described patients feeling there was no choice but to endure these associated discomforts, with one stating, “.they upped her oxygen, they put her on a face mask. That was hard for her because she didn’t want anything on her face, you know. But then she realized that if it helped that she could breathe better. And then she did allow them to do the face mask.”
Attitudes About Medications Used to Treat Symptoms
Although all patients ultimately treated with mechanical ventilation received both opioids and benzodiazepines, according to caregiver reports, only 55% of the patients not treated with mechanical ventilation received opioids and 37% received anxiolytics during the last week of life. Although we did not specifically inquire about previous use of these medications, only two caregivers mentioned chronic use of anxiolytics, and none mentioned chronic opioid use during the last six months of life. Review of medical records substantiated these reports. Indications for opioids identified by caregivers were pain and dyspnea, and indications for anxiolytics were anxiety and dyspnea. A predominant theme emerging from caregiver responses was reduction in distressing symptoms with the use of medications. Comments about medication effects included, “… when it would get to the point where she would kind of panic, so then they gave her [diazepam] to calm her down. You know that worked really well…” and “They had her on a morphine pump to help keep her comfortable, and later on she had inhaled morphine. The nurse said it wouldn’t make her lungs better but it did make her feel like she was breathing again.” Although increased fatigue and drowsiness with administration of opioids and benzodiazepines were identified by some caregivers, symptom relief also was acknowledged: “And so the pain meds were increased and one day he’d be talking and then the next day he’d be out of it, but he was more comfortable and he was more at peace.”
Another theme emerging from caregiver responses was concern about medication side effects, including respiratory depression, drowsiness, confusion, and fatigue. One caregiver felt effective treatment of pain was limited by side effects, noting, “I think it was controlled as much as they could without putting her out.” Other caregivers reported patient and caregiver hesitance in accepting certain medications, with one stating, “[Patient] had to read up on morphine before she would [use it]. She had to read up on it and I remember what she said, she said it can cause my breathing to slow down. I said yes it can. I said it can even cause it to stop.” Some medical providers tried to ease these concerns. According to one caregiver, “[Nurse] said if you think she needs medication for chest pain, and you can’t push the button because you’re afraid it will interfere with her breathing, he said, you call me and I will push it.”
A final theme was attachment of stigma to certain medications by caregivers, patients, and medical providers. Some medical providers alluded to certain medications being appropriate only immediately before death or even hastening death. One caregiver described, “.we finally got to the point [death was imminent] and [medical team] was really good about explaining the pain meds and what they could do and you know that she wouldn’t be able to respond once they upped the meds and it was like, let’s make her comfortable because that’s what’s more important. Things will speed up once we do this and that’s why it’s time. She’s ready.” Another said, “…you know when they start putting you on morphine and stuff it’s only a matter of time.” Others referred to issues with medication misuse or abuse, making comments like, “I think he wanted to be kept sedated so he asked us several times to push the [lorazepam] and the morphine. I mean he said well don’t be stingy with them .” and “[the physician] said well, if you want to make her a dope addict or just keep her doped up, I mean it was just so. I said, look I didn’t make these decisions. I just want to make her comfortable.”