Main

A diagnosis of oral cancer is a life-changing event, which has potentially life threatening implications.1 Oral cancer can be debilitating, disabling and disfiguring and can have a massive impact on the quality of life for that individual.2 Every day functions, which we often take for granted, such as eating, speaking, smiling or kissing, can be affected, despite the best efforts of the most skilled surgeons.1 Diagnosis and treatment can have a devastating impact on the patient and their family and friends, and this can lead to anxiety, depression and withdrawal from society, if the necessary support is not put in place as an integral part of the care package.3

The emotional support provided by the care team is every bit as important as the surgical management.4 This was recently illustrated to great effect during an interview which I undertook as part of a research project aimed at identifying the key dimensions of person-centred care (PCC) as relevant to dentistry.5 The patient being interviewed was a 70-year-old female who had presented to her general dental practitioner (GDP) with a non-healing ulcer on the lateral border of her tongue. There were no risk factors identified but in view of the history, site and clinical appearance, the GDP referred the patient to the local oral and maxillofacial unit for advice and management. A squamous cell carcinoma was diagnosed and the patient was treated successfully with surgical excision and a free radial forearm flap. At the time of interview, three years post-surgery, the patient had made a good recovery and was enjoying an excellent quality of life.

The interview was conducted for research purposes, primarily to understand PCC from a patient's perspective. The luxury of sitting and listening to a patient for over sixty minutes talk about their condition, and the impact which it has had on them, physically, emotionally and psychologically, is one which is rarely afforded to a general dental practitioner. It is, however, a very useful experience, and provided the researcher (me) with a much better understanding of the impact of oral cancer on a patient, and the important role which the oral health team has in early detection, timely referral and providing a person-centred approach to care.

Throughout the interview, the patient was effusive in her praise of the care that she had received from her own GDP and the maxillofacial team, and she used her experiences to highlight what she considered to be the key factors in delivering high quality person-centred care. Her focus was almost exclusively on the relational aspects of care and how she had been treated as a person.

'The surgeons who looked after me were exceptional in their clinical skills. So were the nursing staff but it was more than that because they cared for me as a human being, as a person rather than as a patient who happened to have mouth cancer.'

The patient repeatedly highlighted the importance of being treated as a person, and not just another 'cancer patient'. Being 'treated as a person' was highlighted within other patient interviews but appeared to be particularly relevant in view of the emotional and psychological impact of the diagnosis and treatment of oral cancer. The maxillofacial team had developed a strong connection with the patient, which was valued on a deeply personal level and was key to engendering trust.

'When I went to maxillofacial I was welcomed as – in the best possible use of the word – a friend. As a patient, but as someone that they knew, someone who mattered.'

The patient had been treated by the same dentist, and the same surgical team for many years and this level of continuity was greatly appreciated and valued. Her personal experience had greatly influenced her attitude towards her care and her view of the standard of care delivered. The patient considered that her surgical care had been exceptional and it was only later in the interview that she mentioned a series of complications, which had arisen.

'There were technical problems with the surgery but the compassion and the “We can do this, we will do this, we will get it right” were so amazing and the motivation that they gave me was so amazing that I was fine with that.'

The respect and high regard which the patient had for her maxillofacial team was obvious, and this was directly related to the compassion, empathy and care which she had experienced. She considered the surgeons to be highly skilled and her treatment to have been a huge success. When this was discussed in more detail it became apparent that she had experienced various post-operative complications including flap failure, MRSA and damage to her vocal chords.

'I had a free flap which partially failed and I had to go back into hospital for some patching up. I developed MRSA in the wound on my arm and the neck wound was very reluctant to heal. It was the end of September – I was just about eating pureed food and I suddenly felt something cold inside my blouse and I had a look and there was pureed broccoli and it had come out of my neck. I actually had a fistula which meant another ten hours of surgery. The first surgery, the therapeutic one was 18 hours and then I had ten hours of reconstructive surgery and that went pretty well but I think at some point my vocal chords got a bit twanged and for several months even I couldn't understand me.'

The patient had completely dismissed these technical complications and judged the standard of her care on the approach and attitude of the surgical team. She was willing to simply dismiss the complications as she had complete trust in the maxillofacial team and believed that they were focused on doing their absolute best. This secure trust6 had been built over many interactions with the team where she had been treated with kindness, empathy and respect.

This contrasted sharply with her views on a new dentist who had replaced her now retired GDP. The patient complained that her new dentist had failed to acknowledge her concerns about her dental care when they first met. Her opinion had been formulated at their first meeting and was based on her view that she did not feel valued as a person. This immediate evaluation was based solely on the soft skills of the dentist and formed the basis of her low opinion of the quality of care provided.

'I thought he doesn't care, he's not interested, he doesn't know, he doesn't understand, he doesn't want to know, he doesn't see me as a human being with valid emotions or even a valid experience. He sees me as someone on whom he is going to perform some kind of dental examination and get money.'

Unsurprisingly, the patient chose not to return to this particular GDP but elected to find another dentist who was more empathetic and willing to acknowledge her dental anxiety as a consequence of her previous diagnosis and surgery.

The relational aspects of care are widely acknowledged to be a fundamental aspect of PCC7 and evidence from health services research indicates this leads to enhanced patient satisfaction, improved outcomes, enhanced health status and reduced utilisation of services.8,9,10,11 It is also claimed that PCC can result in greater work satisfaction for professionals and reduced levels of medical litigation.12 Such benefits are desirable for both patients and health professionals, and it is therefore vitally important that NHS Commissioners and Dental Regulators ensure that the dental team operates within an environment which supports and promotes the delivery of PCC.

The key dimensions of person-centred care in relation to dentistry have previously been described as connection, caring attitude, communication, and control.13 The interviewee's previous experiences with her former dentist and the maxillofacial team had clearly delivered this in abundance, and this was how the patient judged the standard of care provided. She had a strong connection with the care teams; was treated with empathy, respect and understanding; and she was provided with the necessary level of information to be involved in her treatment. More importantly she was listened to; she felt empowered; and was treated as a person with specific needs.

'When I actually had the diagnosis that I had the same cancer in the same place for the third time, I was obviously distraught and I was in a very, very dark and low place from the fear about the treatment and what they were going to do to me. What was I going to be like afterwards; was I going to survive? So, there were all those fears which were very, very big but there was the empathy and the compassion that they were there beside me, that they would do everything they could possibly do for the best possible outcome and when I was emotionally distressed I was not viewed as a silly irrational woman. I was viewed as someone who needed an extra bit of support.'

PCC is particularly important within general dental practice where members of the dental team look after a large cohort of patients with vastly disparate views, attitudes and priorities towards their oral health. The dentist-patient relationship is absolutely critical for most patients14,15 and forms the foundation of a successful dental practice.9 In an increasingly consumerist dental market, delivering or, indeed exceeding, patient expectations is an important factor in maintaining a successful business.9 Delivering high levels of patient satisfaction is inextricably linked with the provision of PCC16,17 and as highlighted earlier, this can also lead to fewer patient complaints and reduced litigation.11,18

The influence of PCC in relation to health outcomes is well documented19,20 and this must be considered highly relevant in relation to oral cancer where a strong dentist-patient relationship can provide an enhanced environment to support early detection. This provides greater opportunity to identify risks, provide preventative advice, detect changes in the oral mucosa, and provide holistic care and support should referral be indicated.21 Communication is absolutely key and the GDP can play a vital role in every step of the process. The importance of adequate training to maintain and update knowledge on the early detection of oral cancer has been recognised by the General Dental Council.22 It is also worthwhile noting the level of import afforded to communication skills and the provision of person-centred care within the GDC's Standards for the Dental Team23 which were integral to the success of this lady's care.

The skills and knowledge which exist within general dental practice are a vital component in delivering care for patients with oral cancer. Much of this centres on the benefits of relationship continuity and the shift towards integrated care.25,25 Continuity of care enables establishment of a therapeutic relationship within the practice team26 and this has been recognised as an important aspect of delivering high quality care.27.

At any initial consultation the healthcare professional needs to develop rapport and establish a connection as part of the consultative process.28,29 The skill of the general dental practitioner is to connect with each patient, build rapport and understand the specific needs of the patient before providing tailored treatment options for discussion. The dentist-patient relationship is particularly important in providing the emotional support and understanding for anxious patients or for those recovering from serious illness or complex surgery. This was clearly a missing factor when the patient attended their new dentist, and would seem to have contributed to the breakdown of the relationship.

'This dentist had no interest in me as a human being at all. I had no confidence in that person as a person, I had no confidence in him as a dentist either.'

As GDPs we are in a highly privileged position to have the trust of our patients. They trust us to have the training and knowledge to detect suspicious oral lesions and trust us to have the experience to know when to refer. They also trust our profession to provide them with person-centred care throughout their treatment journey and beyond. Empathy, understanding, kindness and respect are greatly valued by patients, often beyond that of the technical outcome, and it is important that we always remember to treat the person and not simply the cancer.

'I think all healthcare professionals need to have and to develop their innate skills of compassion and empathy and respect for people. Respect for me as a person. It's so simple, it costs nothing.'

Note

The qualitative interview was part of a research project funded by the NIHR and ethics approval was obtained from the relevant authority. Also, the title was taken from Gerteis M, Edgeman-Levitan S, Daley J, Delbanco TL (editors). Through the Patient's Eyes. San Francisco: John Wiley & Sons, 1993.