Michael Gill: Improving patient information

A recent report by Macmillan suggests that clinicians are failing to provide adequate information to patients who have recently been diagnosed with cancer. The Cancer Experience Survey is startling as it reveals that 1 in 4 cancer patients do not understand the explanation of what is wrong with them. In addition, about half are not told about the future side effects of their treatment.

The discussion around improving patient information has been ongoing for many years. A Google Scholar search reveals over 3.5 million published articles dealing with improving patient information. Every author appears to support the idea and things are being done, lead by clinicians in the main, but it is happening at glacial speed. Macmillan needs to be congratulated for conducting the survey. It is encouraging that 73% of respondents completely understood the explanation given to them about their cancer diagnosis. This result, however, may not be so positive for other disease categories.

The buzzwords of “patient experience”, “patient satisfaction”, “shared decision-making” and “patient communication” abound in the literature, but I suspect this is not reflected by most patient’s experience.  Cancer care may well provide the best support for patients compared to other major diseases.  

Patients own their condition and they pay the clinician either directly or via the tax or insurance system.  Furthermore, they have to live with the outcome not the clinician. As the key players, patients have a right to be provided with information, to be given time to ask questions, and to have direct access to their medical records. These actions are a good first step, but not nearly enough, particularly for those with serious conditions.

Patients who have been newly diagnosed with cancer, or a major chronic condition, or even following a major acute event are often in shock. To expect that they can absorb complex issues, detailed instructions, and comply with complex medication instructions from a single peak diagnostic consultation is unrealistic.

I have spoken to dozens of patients with chronic rheumatoid arthritis and many have been dissatisfied with their diagnostic experience. This tallies with a survey in 2013 where over 30% of respondents indicated poor communication with their specialist.

I once watched a senior clinician talk to a patient who was about to be discharged from hospital after a bowel operation, which required the use of a colostomy bag. The complex hygiene steps required and the need to monitor the site for infection were clearly beyond the worried patient at that time. They were in trauma. It struck me that it would have been much better if the doctor had given the patient or their caregiver the instructions on a video or audio file, so that they could have replayed them again at home. This would have greatly assisted the patient. Patients with severe rheumatoid arthritis are often in complete shock for weeks and months after diagnosis. The impact of the disease is a hammer blow to their self belief, and coupled with this is the impact of a cocktail of strong medications with numerous side effects. This is a very emotional and complex environment and I do not suggest that clinicians can easily navigate this space with the patient. During the first year patients want to understand how they can cope. They want to know how the disease will progress and they need support. 

In this era of technological innovation, the are many ways in which clinicians can communicate more effectively. For example:

  • Writing instructions on paper;
  • Voice recording the consultation, instructions and providing these to the patient via email;
  • Real time telehealth;
  • Video recording; or
  • Insisting that the patient bring along a carer who must take notes.*

In summary, clinicians need to augment their face-to-face consultation with carefully thought out support material, multimedia, and online resources. They need to insist that a carer be involved wherever possible. In the end the aim is to reduce stress and trauma and to increase the amount of essential information that patients take on over time.

Michael Gill is founder of Dragon Claw and a former board member of the Health Informatics Society of Australia. For a full bio and competing interests, see here.

*The Macmillan survey indicated that 58% of respondents said that the doctors or nurses definitely gave their family or someone close to them all the information they needed to help care for them at home.

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  • Mitzi Blennerhassett

    There is long-standing research calling for cancer patients to have consultations taped, or audiotaped (Tattersall MHN et al, J Clin Oncol 1994; 12: 1305-11; Ong LML et al, J Clin Oncol 2000; 18: 3052-60 etc) but actual implementation has been piecemeal. It’s cheap, it’s what patients need – why isn’t it happening? This and other issues are raised with referenced discussion sections in ‘Nothing Personal, disturbing undercurrents in cancer care’, Radcliffe, 2008 -winner Medical Journalists Association Open Book Award.

  • Michael Gill

    Thank you Mitzi. I will look at the reference.

  • Alison Stemp

    I once discussed the option of taping consultations with a psychologist who had reservations since for some patients they may go home and keep replaying the point at which they were given their diagnosis and that this might be damaging for them. As with all information giving processes we need to be careful to assess what is right for that individual.