The needs of relatives of advanced cancer patients

Wesley E Fabb

HK Pract 2018;40:73-74

When in the sixties the discipline of general practice was emerging from the shadows and practitioners were attempting to define its characteristics, a group of educators at the University of Illinois developed a so-called Clinical Competence Chart that set out the steps that ought to occur in the process of a general practice consultation. The Chart was adopted by the Royal Australian College of General Practitioners as the cornerstone of its training curriculum.

The Chart began, not with the traditional step of ‘History Taking’, but with ‘Establishing Rapport’, in recognition of the reality that information about the patient’s present, past and family history would be accurate only after the doctor and the patient had established a mutually respectful relationship in which the information the patient possessed and the knowledge the doctor had acquired through years of experience were considered as similarly valuable in reaching an assessment of the patient’s condition, and that of the patient’s family and relatives. Once rapport is established, the patient and the doctor are able to construct a narrative that captures the present and past history of not just the patient, but also the patient’s family of origin and the relatives, as well as the patient’s current family. A picture of the distinctive illnesses of a generation, both physical and mental, emerges.

In recognition of the uniqueness of individual families, in his novel Anna Karenina, Leo Tolstoy wrote: "Happy families are all alike; every unhappy family is unhappy in its own way." Family doctors know this only too well. They are in the privileged position of being privy to the intimate secrets of the families for whom they care, some happy and well adjusted, some unhappy, worried, frightened and alarmed about what may befall them in the future.

The superb paper: ‘Cancer risk perception and prevention behaviour among relatives of advanced cancer patients – a qualitative study’ by Yau et al highlights the pivotal role that family physicians can and should play in assessing and sympathetically managing the fears of relatives of those with advanced cancer. Through patient anecdotes, the paper exposes the deeply held fears of these relatives, fears that sometimes are realistic, sometimes not. Experienced family physicians are aware of many of these fears and address them spontaneously.

The study shows though that although relatives demand sound information about the risks they face, and some regard the family physician as a possible source, they perceive that there are barriers to getting that information, such as the doctor’s busyness, the shortness of the consultation, and the attitude of the doctor. Many had sought information from the Internet, but found it voluminous and questioned its quality and validity. Many had not considered seeking information from a family physician.

Returning to the Clinical Competence Chart, another step in the consultation process is ‘Preventive Care’. In a past era, when diagnosis and treatment reigned supreme, prevention was afforded the lowly status of ‘a poor relative’. Its crucial importance in patient care emerged slowly. It is now regarded as central to the practice of family medicine. Our specialist colleagues now stress its importance, as do public health practitioners. Moreover, environmental influences on health, on illness, and in prevention now feature prominently, whereas previously they were ignored. Patients are now acutely aware of them and expect their doctors to be likewise.

There can be no more important area of preventive care than avoiding unnecessary anxiety among the relatives of advanced cancer patients. They need investigations that yield accurate diagnostic, genetic and prognostic information, health checks, and regular follow-up that comforts and reassures them.

Just as importantly they need precise information, explained lucidly. ‘Patient Education’, part and parcel of any consultation, is of particular importance in counseling relatives of cancer patients. As well as oral advice, they need written information that they can read and re-read. Anxious people find it hard to remember all they are told and sometimes get it wrong. Comprehensive and reliable written information is essential backup.

In counseling relatives of patients with cancer, family physicians need to be receptive, non-judgmental, patient, unhurried and empathic. That sounds like the ‘counsel of perfection’ doesn’t it, but we don’t expect family medicine to be easy. Trainee family physicians need to acquire the ability to identify the anxieties that relatives of cancer patients experience, and the skill to manage them empathically and proficiently.

This article highlights this important aspect of family medicine, outlines the fears relatives harbor, their desire for information, the challenge of avoiding unnecessary anxiety, and the barriers to a helpful response. Above all, it encourages family physicians to engage in this difficult area of practice with sensitivity and expertise.

Family physicians need to build up confidence among their patients that they are equipped to manage this aspect of practice and willing to do so, even in their busy clinics. The excellent paper: ‘Cancer risk perception and prevention behaviour among relatives of advanced cancer patients – a qualitative study’, explains why, and points to how family physicians can meet this challenge.