Doctors and surgeons are shedding their veil of omniscience and asking patients about their views of procedures and treatments. Patients’ preferences and experiences are being taken seriously. Jane Blazeby and Angus McNair, Muntzer Mughal and Sri Thrumurthy, and Melanie Turieo report.
Jane Blazeby and Angus McNair want a new system
Surgeons meet and talk with patients before operating on them, but these conversations are an area of surgical practice that is rarely the subject of research or audit.
One purpose of consultations is to provide information to patients so that they gain sufficient understanding to authorise the operation - a process known as informed consent. However, it is challenging to know exactly what information should be discussed.
Ethicists argue that it is necessary to include all issues that are 'important' to individuals, but this can be difficult because people have different values and what is considered important may be highly variable.
One solution would be to communicate copious, detailed information to ensure that all 'important' issues are covered. Evidence shows, however, that over-disclosure may reduce understanding, and it would make consultations lengthy and didactic. Another approach is to simply ask patients what they want to know before surgery; but patients, who may know very little, are unlikely to be able to formulate their concerns, let alone ask meaningful questions.
We have examined current practice of informed consent for surgery for cancer of the gullet. We made real-time audio recordings of out-patient clinic consultations, followed by private interviews with patients to establish their understanding and interpretation of the consultations. We also asked patients if there were unmet information needs and surveyed over 100 patients asking them to rate types different of information.
Results showed patients appreciated the surgeons' consultations, and a wide range of information was discussed. There were established communication patterns amongst surgeons identified and they did focus upon information that patients were less interested in. The work also confirmed the findings of others, that patients' desire sensitive information, such as details of their chances of long-term survival, which can be difficult for surgeons to communicate.
In light of this research, we support another solution to the challenge of communicating information for informed consent: the concept of 'core disclosure'. This involves the identification of the essential information for communication to all patients at a minimum. Core disclosure would therefore act as a baseline but, most importantly, may stimulate discussions about additional information desired by individual patients.
Methods for development of core information sets are not yet established, but it will be essential to ensure that core sets contains information of importance to surgeons, and also of importance to patients.
1 AGK McNair, ST Brookes, CG Streets, R Krysztopik, AD Hollowood, CP Barham, P Kinnersley, JM Blazeby (2009), Identifying patients’ information needs in upper gastro-intestinal (UGI) cancer British Journal of Surgery 95(S6)1-58
Surgeons and patients disagree, find Munzter Mughal and Sri Thrumurthy
Curative surgery for tumours of the gullet and stomach is technically challenging. It has a long period of hospitalisation, a significant complication rate and a long recovery period. Furthermore, the five-year survival rate is about 30 per cent even in those patients who have successful surgery.
We have tried to determine which factors patients consider most important when considering this type of surgery, and whether they think differently from doctors faced with the same choices.
Patients and surgeons differ
Our study1 revealed that both surgeons and patients were more interested in the cure rate and the quality of life after surgery, rather than in factors like the type of hospital and the surgeon's reputation. However, patients were far more concerned about quality of life, while surgeons were more concerned about the death rate.
This implied that patients would rather die early to avoid serious surgical complications, than to survive the operation only to suffer a protracted recovery with a poor quality of life. In stark contrast, doctors were more worried about the patient dying than having a complicated recovery.
The study also revealed that patients were more likely to follow their gut instinct, whereas the doctors appeared to be split psychologically between wanting a low death rate (a key influencer of published performance outcomes) and agreeing with patients that quality of life was more important.
This intriguing finding illustrates a few of the differences between what doctors and patients say is important to them, and emphasizes the need for doctors to look beyond their own perceived concerns to seek those of their patients.
It also became apparent that patients in certain sociodemographic groups tended towards certain patterns of choice.
Women placed greater emphasis on their surgeon’s reputation than men did. Patients with secondary-level education valued quality of life much more than those with higher qualifications did. Patients with a higher income preferred a low death rate and greater cure rates. Married patients valued greater cure rates more than single patients did, whereas those with private health insurance valued lower mortality more than those without insurance.
The challenge, especially for the more traditional practitioners, lies in overcoming personal prejudices in guiding patients through treatment. This will inevitably entail focussed doctor-patient discussions about the trade-offs of cost, benefits and risk – all in the context of patients' preferences. Technical outcomes are important, but only in the context of patients’ expectations.
1 SG Thrumurthy, JJ Morris, MM Mughal, JB Ward (2011), Discrete-choice preference comparison between patients and doctors for the surgical management of oesophagogastric cancer. British Journal of Surgery 98(8): 1124-31.
User-friendliness would increase compliance, argues Melanie Turieo
With more and more people regularly relying on prescribed medication, it’s worrying to consider how many fail to take it correctly, or even at all. The World Health Organisation estimates that less than half of the population, including in developed countries, takes even life-saving medication as prescribed.1
Imagine this scenario in other sectors - people not taking a photograph because their camera was too much hassle, or not listening to music because their mp3 player took too long to prep. In the medical realm, the least effective treatment is one that isn’t taken. Efficacy of treatment is dependent on both how effective the drug is, and the patients’ compliance with the dosing regimen. Drug delivery devices that are designed to integrate into users’ lives are more likely to result in effective treatment. I’m thinking of, for example, injection pens, auto-injectors and insulin pumps for diabetes, arthritis, multiple sclerosis and growth hormone deficiency, and inhalers and nebulizers for asthma and chronic obstructive pulmonary disease.
At Cambridge Consultants, we recently released the results of a study examining how the user-friendliness of devices can impact patients’ acceptance, compliance with dosage and, ultimately, health outcomes.
Lifestyle most important
Patients opting to change devices were motivated most by lifestyle factors, with 28 per cent citing discretion and 21 per cent portability as the biggest catalysts for change.
So important are these factors that 77 per cent of all study participants said they would be willing to pay a small premium for more user-friendly devices. This challenges traditional industry conceptions about the role that the drug delivery device can play in compliance. The industry has been good at maximizing drug efficacy, but patient experience factors haven’t been a primary focus.
Ultimately, pharmaceutical companies could improve their market share by shifting emphasis to the broader patient experience.
Patient experience encompasses all aspects of a person’s interaction with a medical product, from the device itself, its packaging and instructions, to online educational materials. All of these elements affect how easily a medical device integrates into a patient’s lifestyle, which is a critical factor in people sticking to their medication.
Patients have a greater choice of devices than ever (75 per cent of patients in our study reported that their doctor gave them a choice of devices to use), and with three out of four willing to pay a premium for better devices, the market is ripe. Such competition should have the industry looking more closely at users’ needs when making decisions about the delivery vehicle for medication. This can only lead to improved devices for end-users, greater compliance and better health outcomes.
1 World Health Organisation (2003), Adherence to long-term therapies: Evidence for action. Geneva: World Health Organisation