Table 3 Patients’ concepts of individualised medicine

Personal growth

Emotional disease handling

“I know that a cancer diagnosis is very dramatic. Itchanges your life forever. It makes you realize that you aremortal. It is only those people who have serious illnessesearly in their life who are forced to stop and look at thefact that their life is so fragile. Nobody knows how muchtime you have left. Somewhere along the line I decided thatI was going to use this as an opportunity to strengthenmyself. I guess to take charge and get rid of all of thisbaggage I have been carrying around for the past 20 oddyears or so” [27]. “I would say sometimes that a trauma likecancer is a blessing in disguise because it makes yourealize to live each moment. Each moment is precious” [16].

Biographical reassessment

“I don’t sweat the small stuff anymore. Life istoo short” [26]. “Maybe it [breast cancer] was just ablessing in disguise” [26]. “I mean, I changed my whole thinking. Iwas all into my career, and then I thought, do I want thekids to remember me as going out the door all the time ormaking chocolate chip cookies. And I totally reversed mythinking and stayed home for quite a few years, 3 or4 years. I was more of a housewife and mother and allthat. I don’t regret that because I have three lovelychildren” [30].

Correlation building

“For the first time I felt like the various andseemingly disparate symptoms I was coming in with actuallymade sense to my healthcare provider and fit within aframework that that person understood, and also within atreatment model that that person understood, and then couldbe used to help make me better—which it is, and Iam” [29]. “Today I see that heavy mental pressureover time was what set the MS off, so preventing stress ismy best medicine” [23].

Transformation

“kind of like an abstract thing if you feel withinyourself. How do you put that? I think I developed astronger love for nature and the world around me –that kind of religious. Not, ‘oh – God savedme.’ I got more in tuned with my environment” [26]. [She judged the effectiveness of her therapyboth in terms of symptom relief and support for a]“wider transformative journey” [26].

Holism

Interdependencies of various treatments

"It's time in the sense that they have got longer, but alsothey appear to be more interested. I like our GPs enormouslyand they're very talented individuals, but they don't havethe time to talk…(homeopaths) look at the whole thingand they will say about diet, they will say what about yourbedding, what about this, have you changed that?" [21]

Respect of the whole person’s state

Physical/Psychological holism

“When I am feeling good, I think it’s mental andit’s physical and it’s spiritual; it’s allof it together” [29].

“I think it’s healing emotionally, and when ithealed you emotionally, it healed you physically” [31].

Spiritual holism

“And so preventative medicine, good, and Imean,…I think a very holistic view is good, and so ifsomething helps you, even though it might seem rather mysticor mystical and you know, I think try it, although I am froma medical background and…on one hand I’mthinking well, we need to see research,…and I work ina very research-based kind of environment, but I’malso a great believer in…these other kinds ofmetaphysical or other kinds of therapy in anysituation” [18].

Social holism

“…I go already relaxed knowing that it is goingto be a really useful hour, that she is interested not justin what I might be feeling or the things I think could needworking on but interested in what has been going on in mylife [She] knows a bit about my family, my background sheknows where there might be problems areas outside of thebody and this will help to create al feeling of trust andyou can rely on it and rely on her. She does the things likethe glass of water and the personalised stuff and oils andwhat have you. It’s just knowing that you will go awayfeeling that you’ve had both physical and emotionalsupport” [32].

Economical holism

“It’s not cheap, but I find I get benefit fromit. So, I spend my money for something like this” [31].

Alliance

Time

Time to be listened to

“I think the biggest thing is that there is time. Thereis individual, one-on-one time” [29].

“I think the quality of listening is very important. Myexperience [with IM] has been that the doctors listen, andthey make suggestions, and they listen back to how you feelabout the suggestions. I am beginning to think thatprogressive medicine is finding a doctor who willlisten” [29].

Time for transformation

“You know in retrospect, it all looks so obvious. Now Isee so many people who I feel are stagnant. It is a matterof being ready to embrace all of this chaos. This kind ofself-involvement won’t happen unless you are 100% intoit. It has been my own personal journey, and looking back, Idon’t think it would have happened any sooner. Youtruly need to be ready to take it on. Once you are I guessmaybe things just start to happen” [27].

Time between and during visits

“The doctor sees you for certain periods of time andthey leave you alone in between” [26].

Healing Relationship

Respectfulness

“And every time I bring it up they blow it off. So Ididn’t get very far when I voiced my concerns.” [37] “Yes, perhaps there’s a difficultynow between being autocratic and being patronising, whichmust be quite though” [33].

Wish for guidance, counselling and empowerment

“…it’s a partnership, they’ll look atwhat can you do as well” [32]. “To be advised and encouraged and to bemade aware of how I can improve and help myself. To reach abetter state of health and also mind” [19].

Emotional bonds

“My doctor here, she was funny, graceful, and lovingand so she empowered me. We make decisions here as equals.She said, “Okay, so what do you want to do?” Itwas like I was the doctor. And so I told her some things andshe said, “Yeah, okay, I agree with that.” Shewas just so clear. She was always there for me too. In allof my care experiences here, it was like, “Tell mewhat is going on for you. Okay, well here are a few thingsyou might want to try and this is what you can expect” [27].

Integrative Care

Tailored Care

“Because people are individuals, it could suit somepeople a lot better than like, mainstream medicine,and…some people may just be more comfortable withthat.…I think homeopathic medicines are agood…rather than just like the same thing for eachdifferent illness sort of thing, something unique for eachperson that suits them. I think…that works very well,so yeah” [18].

“I would consider one [risk information] that’smore tailored to the individual, instead of being givenbooks that say ‘The risk is this, the risk isthat.’ It’s too general. Why isn’t ittailored for the person who’s there? Insteadit’s blunderbuss approach really, it’s just kindof so wide” [33].

Integration of CAM and COM

“Making a decision about what treatment to go for is acombination of belief, what you feel in your own body, andwhether others have had success. That’s what drives me. . . if you rely on one doctor, or whoever, you only getpart of the picture. In the end only you can bring all theelements necessary together to make a decision.” [28] “I like seeing a doctor who is aware of thebigger picture. Even if she decides or recommends aconventional treatment, at least I know they’re awareof alternative health thinking…that gives me moreconfidence in the treatment, even if their treatment mightend up being the same [conventional]” [29].

Accessibility

“I expect it [CAM] to be provided on the NHS and [tobe] more widely available” [19].

“I don’t think they [oncologists] were terriblyencouraging. I suppose . . . I know complementary medicineswork, but I had this horrible thing with my diet I was doingwith nuts and fruit. When I told him what I was doing all mydoctor said to me was, ‘What do monkeys eat?” [28].

Legitimating alternatives

“It is just as sound as conventional medicine.It’s just that there haven’t been enough studiesyet” [37]. “CAM needs to be looked at scientificallyin order to give it the credibility that it deserves” [26].

Self Activation

Personal autonomy

Empowerment through education and counselling

“I went to seminars where there was a group of peoplethat offered different thoughts about food as alternativemedicine. It was very interesting and very much aneducation. I also read a lot and talked a lot to herbalistsand naturopaths” [31]. “In the past, in [conventional] medicine,only the doctors go to lectures, to learn new cutting edgethings. But we’re all trying to find out what’son the cutting edge now. We’re our ownphysicians” [29].

Active control

“I know that my disease course is unusual. If I hadgiven away the responsibility and taken cortisone and letmyself be controlled, I would have been in a totallydifferent place.//If I hadn’t taken all thesealternative therapies and walked the road I have walked, Iwould have been in a wheelchair a long time ago.//In the endwe are our own teachers and masters . . . I feel thatI’m starting to own more of my story even though a lotis still too painful to relate to” [23]. “At least I felt I was in control andtrying to do something to help myself, which made me feelbetter” [18].

Activation of self healing power

Activation of physiological self healing

“I think that the two basic differences in approachare: 1) attack the disease, the problem itself, or 2)support the body to attack it. And those are the twodifferent approaches. I compare the medical approach at themoment to the napalm bombing of Viet Nam. I think that isthe kind of mind set—we have a problem and we’regoing to eradicate it. . . . What are you aiming at: Do youwant to kill the cancer cell or do you want to strengthen mybody?” [35]

Healing power of mind

“I think your overall spiritual, psychological statehas a lot to do with [disease] progression. If you believethe thing is more powerful than you are or somehow able toinflict great damage, it’s like pointing the bone. Butif you can…get the thing into perspective and sayit’s just a chronic thing then I think itdoesn’t progress as fast” [40]. “I think so yeah because your mind caninfluence your body so I think that if you don’tbelieve that it’s going to work then it won’twork” [34].

Wellbeing

Physical wellbeing

“As I have had ankylosing spondylitis for over30 years and angina for about 7 years, I do notexpect to be cured. But I hope that my back and pain from myfrozen shoulder which I had for 4 month since myretirement at age 65 will be reduced enough to enable me toenjoy my gardening and an occasional round of golf” [19].

Psychological wellbeing

“…feeling comfortable whether it’s thephysical state of the room or the, the welcome of thetherapist, all, all does something to lower those barriersand make you feel more open and trusting” [32].

Avoidance of adverse drug or treatment effects

“I’m sure you heard one time, ‘Thetreatment is worse than disease,’ you know, before itbecomes an advanced disease. All the side effects that youexperienced from the Western medicine treatments. Oh, myGod, can there be a better way to treat?” [31]

Wellbeing after emotional clearing

“For the first time I felt like the various andseemingly disparate symptoms I was coming in with actuallymade sense to my healthcare provider and fit within aframework that that person understood, and also within atreatment model that that person understood, and then couldbe used to help make me better—which it is, and Iam” [29]. “It was sometimes really hard to get inthere and break it all down to look at what I am made up of,at a microscopic level. It gave me this new appreciation asto why I am the way I am and why I react the way I do.Before I knew if I felt sad or scared, but never reallytotally explored why. Like really explored. It is a toughthing to do” [27].