Table 3.
Patient and family caregiver quotes on palliative care and hospice
| Question | Answers |
|
|---|---|---|
| Patients | Family Caregivers | |
| What does palliative care mean to you? | “To make the pain go away or somethin'.” (PT003, 72-yr-old WM, FEV1 26%) | “Just helping me get through to a normal, everyday living situation and maybe set goals.” (CG007, 65-yr-old WF to PT007, 63-yr-old WM, FEV1 38%) |
| “Easing your way along, that end of life thing. I think of palliative care as comfort care, making you more comfortable along the way.” (CG003, 62-yr-old WF to PT003, 72-yr-old WM, FEV1 26%) | ||
| “That’s care that you get in the last stages of your condition.” (PT010, 71-yr-old AAF, FEV1 71%) | “I think he is very scared of dying from not breathing. Palliative care is part of dying, I think. I may be wrong.” (CG001, 60-yr-old WF to PT001, 57-yr-old WM, FEV1 32%) | |
| “Making life easier. Not changing the outcome, but making life easier.” (CG004, 73-yr-old WF to PT004, 53-yr-old WF, FEV1 16%) | ||
| What does hospice mean to you? | “Hospice means a doctor has determined you only have a short time to live. During that time, the care you receive is palliative care. It's not so invasive.” (PT003, 72-yr-old WM, FEV1 26%) | “(Hospice is) for people who are terminal. It’s your time. They’re just gonna be there with you to support your family while you’re dyin’.” (CG006, 53-yr-old WF to PT006, a 56-yr-old WM with FEV1 13%) |
| “Hospice takes over the drugs. Palliative care does not.” (CG004, 73-yr-old WF to PT004, 53-yr-old WF, FEV1 16%) | ||
| “Pretty much a person who is at the end of their life.” (PT005, 49-yr-old AAF, FEV1 70%) | “I think [hospice] is the last part of whatever the doctors can do, and they’re just tryin’ to make you comfortable while you’re here.” (CG002, 61-yr-old AAF to PT002, 65-yr-old AAM, FEV1 33%) | |
| “Hospice to a lot of people means terminal. It’s your time. They’re just gonna be there with you to support your family while you’re dyin’.” (CG006, 53-yr-old WF to PT006, 56-yr-old WM, FEV1 13%) | ||
| “Where they take care of people who can’t take care of themselves. Basically give them the attention that they need, that they would normally have to go to an institution like a hospital or somethin’. They can receive it at home instead of being hospitalized. It's basically like a home hospitalization.” (PT002, 65-yr-old AAM, FEV1 33%) | “That’s where you’re at the end. My sister, I watched her die. She was in hospice.” (CG007, 65-yr-old WF to PT007, 63-yr-old WM, FEV1 38%) | |
| “Oh, that’s like the end right there.” (PT009, 57-yr-old AAM, FEV1 50%) | “To me, as I’ve been around people who had to end up having hospice care, they can’t do for themselves. They’re about to leave this world. They also assist the family with different things.” (CG008, 61-yr-old AAF to PT008, 61-yr-old AAM, FEV1 25%) | |
Definition of abbreviations: AAF = African American female; AAM = African American male; CG = caregiver; FEV1 = forced expiratory volume in 1 s; PT = patient; WF = white female; WM = white male.