Communication with Patients. Communication with patients was consistently 1 of the 3 domains most frequently identified by all groups, and includes items concerning the ability of the physician to listen, invite questions, speak honestly and sensitively with patients, and talk about dying and death. Examples of quotes from this domain include:
Like when I had my first PCP outbreak, I didn't want to have a certain thing done to me because it terrified me. And I had a lot of doctors yelling at me, “You have to do this, you have to do that,” but then there was one who really listened to me… he was just there to observe and he was the only one who listened to me.
(Patient with AIDS)
My experience… is that doctors don't really like to talk about death… or know how to talk about death. And that was very difficult for us, because this was our first experience with a family member dying… Every time we got the truth, mostly from the hospice nurses, we really appreciated that… it focused us on the issues so we could have some quality time with my dad at the end.
(Family member)
Emotional Support. Emotional support was not originally identified as a domain by investigators prior to review of the transcripts, yet emerged as the domain with the most comments in all patient groups. Emotional support was frequently mentioned by family members and health care workers as well. This domain includes components encompassing compassion, hope, and comfort.
It's like all the doctor knows is the medical end of it and doesn't really get involved personally at all. The nurse is the one who steps in, holds your hand and talks about his or her kids and wants to know about your kids and, you know, what's going on and how you're feeling.
(Patient with cancer)
Accessibility and Continuity. Accessibility and continuity was consistently 1 of the most frequently mentioned domains by both patients and family members. The major components of this domain include structural features of how medical care is organized (waiting times and interruptions) as well as features of the patient-physician interaction (giving the impression that the patient will not be abandoned prior to death). Two examples of quotes from patients coded in this domain are:
I have a vision of my doctor being there for me when I'm getting ready to die. And if he's not, I'm gonna curse his ass out, next time I see him, because I didn't come all this way with him to be left.
(Patient with AIDS)
I had a friend die a year ago. His doctor was accessible; he was there. He didn't become a friend of this person, but he certainly became an intimate part of this person's death.
(Patient with cancer)
A nurse also expressed an important perspective on the issue of continuity and abandonment demonstrating some overlap with the domain of emotional support:
There's that sense of abandonment that comes when there are fewer interventions being offered, fewer reasons to go to see the doctor, or less help to be able to go in to see the doctor. Those little things like phone calls become the line they still have to somebody, a physician who cares.
(Nurse)
Competence. Competence was ranked, by frequency, in the upper half of all domains for each of the patient groups and for family members. In contrast, it ranked 6 of 12 for nurses and social workers and 11 of 12 for physicians. Components within competence not only focused on knowledge, skill, and use of referrals, but also on taking patients' symptoms seriously and knowing when to stop treatments. Examples of quotes from this domain are:
They're in the business of keeping you going and keeping you encouraged and trying this and trying that, and when it gets to that point where you're dying, you want them to stop. You want them to know when to stop.
(Patient with AIDS)
Our doctor could have benefited from having some hospice training and understanding, because she was giving us conflicting information. We know hospice was the expert in this case, but it caused a lot of dissension in my family.
(Family member)
Respect and Humility. The domain respect and humility encompassed components having to do with treating patients as equals, admitting one's own shortcomings, and not viewing death as a personal failure. While this domain was ranked in the lower half of domains for patients and families, it was the domain most commonly identified by physicians and the third most common for nurses and social workers.
Our doctors really distanced at the end, when it was pretty clear that things looked bad and when my mother actually [was dying] they just distanced. They got cold, they got mad, they lost their sense of humor, they lost their humanity, and so they acted to my mom in a far different way than they would have a week earlier when things were going better. It's like they just couldn't handle it.
(Family member)
If you think “it's just another IV drug abuser dying of something that they deserve,” you're going to be bad at helping them die or helping them through it… Whereas it's very different if you give value to their life and you respect the fact that they're a human being the same way the rest of us are.
(Physician)
Team Communication and Coordination. Team communication and coordination was identified more frequently by health care workers than by patients and families. This domain includes structural components (making sure someone is available to help when the physician is unavailable) as well as personal characteristics of the physician (respects and uses the expertise of nonphysician team members). Examples of quotes from this domain are:
My doctor worked with my mental health professional from another agency. They worked very well together. He's not an exclusivist; he doesn't see himself as the almighty doctor.
(Patient with AIDS)
I think the biggest frustration I've ever had in my whole 8 years is not being [part of] a team… I think that the hardest thing for me is when doctors, because of their pride or whatever, feel that they have to have complete control and negate any experience or knowledge you have and won't listen.
(Nurse)
Patient Education. Components from patient education focused on the provision of information to patients and families in ways they could understand and that were meaningful to them in their lives. Prior to review of the transcripts, this domain was not separate from communication with patients but emerged as clearly distinct after transcript review. For example:
It is good to get a little technical. I don't like it when the doctor says, “Oh, your tests are good.” So what does that mean? I like him to say, “Your blood count is this and your hematocrit is that…” I have lung cancer, so I've had a jillion chest x-rays and the first doctor I had would show me them and put it in layman's terms… It gave me a good idea of what was happening.
(Patient with cancer)
Another thing that is really helpful is a physician who can assess where any given person is with their knowledge and take it from there with trying to explain what's going on. Make it very simplistic for those who need it and equally as sophisticated for those who have the ability or the background to handle the information. Tailoring information is really helpful—being able to be the teacher and explain things so that a group of family members can walk away hearing the same message.
Family member)
Personalization. Similar to patient education, personalization was not identified as a domain by the investigators prior to reviewing transcripts. This domain was ranked 5 or lower of the 12 domains for all groups. Components of this domain focus on understanding and treating the patient as a unique individual.
When you're sent out to the specialty clinics, the quality of the personalization of care goes way downhill. They seem to be terribly busy, and it's in and out the door, and they treat you like a number. It's very depersonalizing and demoralizing.
(Patient with AIDS)
It appears that the people who are really speaking highly of their doctors and have a good relationship with them, I think they feel the doctor knows them, not just as a patient, but as a person. They also feel that they know the doctor, not just as a doctor, but as a person.
(Patient with COPD)
Pain and Symptom Management. Pain and symptom management incorporates treating pain and symptoms, including anxiety and depression, as well as incorporating patient preferences for alertness and educating patients and families about symptoms and treatments. This domain did not rank in the top half of domains for any of the groups. Nonetheless, some of the comments belied the importance of this domain.
The most important thing is to know how to treat pain. And when I talk about pain, I'm identifying shortness of breath as pain. To know how to treat pain aggressively with one who is dying, I think that it's probably, to me, priority number 1.
(Patient with COPD)
He was unable towards the end to verbalize… he would moan or he would nod his head… there were indications he was having pain… really having a lot of pain. I just didn't feel that his doctor was thorough enough…[The patient] would get mad, he'd say, “I'm in a lot of pain! Let's do something! Can you give me something? I'm really hurting here!”… It was very, very frustrating. We were all horrified that he had to suffer so much and it was unnecessary.
(Family member)
Inclusion and Recognition of the Family. Inclusion and recognition of the family was the fourth most commonly identified domain among family members and physicians. The three components identified within this domain focus on communication with and inclusion of the family.
My doctor involved my family in my care when I was in the doctor's office, he involved them in my care when I was in the hospital, all along the way. I think your family is a very important part of your care and your support system and your doctor has to keep them involved.
(Patient with AIDS)
[The doctor] was very inclusive of all the family members and the support system and describing what [the patient's] situation was, what were the options, what were some of the outcomes both good and bad. It always seemed to leave a positive note even though something dreadful was happening.
(Family member)
Attention to the Patient's Values. The domain concerning attention to patient's values encompassed respecting patients' beliefs about a range of topics, including religion and spirituality, alternative medicine and lifestyles. One component, not blaming or judgmental about lifestyle, included features such as sexual orientation, drug use, and cigarette smoking.
The doctors were willing to work with us… at least be open to and not condescending of our wish to try alternative types of health care… We both felt very strongly that allopathic medicine had certain limitations and the naturopathic approach can offer some benefits… I've heard some horror stories of some doctors being adamant that you maintain the medical treatment plan.
(Family member)
Any doctor I like is not judgmental. Any doctor that asks me if I smoke in a judgmental way, I don't want to deal with him, because I think he's got me in a slot.
(Patient with COPD)
Support of Patient Decision Making. The domain support of patient decision making was identified least commonly overall and ranked in the bottom half for all groups. Nonetheless, this domain was identified by every group. Components focus on making patients' informed wishes the center of decision making about medical care at the end of life.
My worst experience was a doctor who yelled at me, scared me to death. He suggested that I do something to slow the progression of my disease, and I told him that I didn't know if I wanted to and I would like to take some time to think about that, and he was extremely irate that I would question his judgment and authority.
(Patient with cancer)
It's beyond giving you all the information that you need to make a decision. They all seem to be pretty good at that. I would say it is just a sense that… this person really cares that we make the right decision for us. With a lot of them, it's sort of like a disclaimer, you know, they put out all the information and say “Well, it's your decision. Let me know.” But they should really be concerned that, whatever your decision… they've done everything they can to help you make the best decision for you.
(Patient with cancer)