6.4 Communications with the public, politicians, and the news media

Two universal issues to have emerged in recent years continue to generate a great deal of attention in both the political and public arenas: (1) the future provision and delivery of health care and social services to the population at large; and (2) meeting the needs of the elderly, who are living longer, in greater numbers than in past generations, and with a corresponding increase in the incidence of chronic or long-term illness or disability. Running parallel is the trend in many countries away from institutionalized care to accommodate the preference expressed by many people to receive care and support in their own home in the event of illness or incapacity; the potential economic benefits of which have not escaped policymakers, presenting them with a persuasive argument that suggests a significant shift in the focus and scope of community care in the decades ahead. Against this backdrop is the increasing attention on all fronts given to the quality of care and support—or lack of—for those living with a terminal illness, both patients and their families or loved ones.

In assessing the prevailing communications environment, it is important not to lose sight of the growing evidence in the literature that the philosophy and principles of hospice and palliative care are gaining currency beyond meeting the immediate needs of those living with a shortened life expectancy. The holistic concepts of ‘whole-person’ care and managing ‘total’ pain are steadily working their way into family and hospital practice, long-term or extended care, and home care. This emerging trend has served to facilitate discussion about when, during the illness trajectory, should patients be referred to specialized end-of-life care. Almost from its earliest days, however, hospice and palliative care have been associated in the minds of many people—among them health professionals—with dying and death. This has created at times almost insurmountable barriers in the medical decision-making process and in conversations about life’s last chapter.

Coverage of end-of-life issues in the news media has tended to be in the context of ‘patient choice’, which has done much to fuel the highly contentious public debates on assisted or facilitated death, medical futility, and on who has the ‘final say’ in the medical decision-making process. The protagonists in these debates focus on their respective interpretations of ‘dying with dignity’, which inevitably encompass the potential cost—both emotionally and financially—of sustaining life. This has resulted in a broad range of initiatives to promote advance care planning. Honouring the principle of patient autonomy and respecting patient wishes, nonetheless, has become something of an ethical minefield. A residual effect has been the increased support given—ironically on all sides in the ‘dying with dignity’ debate—to the need to improve access to quality end-of-life care.

The communications environment in which to engage in an open dialogue with the public, politicians and policymakers, and the news media, suggests a far more proactive approach to communications than has hitherto been the norm.

There are differing points of view regarding language usage, particularly with patients, families, or lay people in general. This is not in reference to medical speak or terminology. Discussed here is how people are inclined to interpret language. As pointed out, ‘hospice’ and ‘palliative care’ are associated in the minds of many people with dying and death and, as a consequence, are taboo subjects or at least exceedingly difficult ones to broach. An important starting point in any dialogue, therefore, is to establish what a patient or family understands of the illness and what they want to know (or not know) in terms of, say, prognosis and likely scenarios as illness progresses—the ‘what ifs’. From here, one can begin to gauge expectations with regard to end-of-life care, which can then lead into a discussion of hospice and palliative care. The challenge, however, can be compounded by modern language usage.

As individuals, we may go to extraordinary lengths in our day-to-day lives to avoid being the bearer of ‘bad news’ in almost any context. We consciously work, it often seems, in overdrive—to ‘soften the blow’, ‘sugar-coat the message’, to be ‘politically correct’ or ‘culturally sensitive’. In doing so, we risk living much of our lives evading reality. As an example, ‘openness’ and ‘transparency’ have come to replace ‘honesty’ and ‘truth’, fundamental principles of hospice and palliative care. Also, is the ‘conspiracy of silence’ that so often prevails as death approaches—or, for that matter, whenever confronted with crises in our lives—nothing more than a manifestation of a life-long discomfort with the acceptance of the inevitable, of reality—or of truth itself? We live in a society that has, to a greater or lesser degree, devalued or inflated the meaning of words and, as individuals, we often manipulate their use and meaning to serve whatever our individual or collective ends might be. This begs the question: are we losing the ability or capacity to communicate effectively—or to hear what we need to hear—with empathy and without hurt or hurting?

An often overlooked and underappreciated ‘component’ of language is ‘non-verbal’ communication. People are not always conscious of how and what they communicate through their body language, facial expressions, or in their tone, no matter whether they are in a one-on-one situation or addressing a large audience or meeting with a small group of people.

There is a direct correlation between the quality of care and the quality of communication. The quality of care for the terminally ill patient rests almost entirely on empathetic and meaningful two-way communication among or between all protagonists. It is essential to building a therapeutic relationship, facilitating informed decision-making, and effecting a positive change in the illness experience. The need is to transport this same mindset in reaching out to a far broader audience with the ultimate purpose of improving public understanding, advancing policy development, and building an informed news media. In other words, advocacy, which can be broadly defined as either taking a proactive stance (i.e. capital ‘A’ advocacy) or taking a reactive stance (i.e. small ‘a’ advocacy), in other words, acting ‘after the fact’. Given the nature of the news media, ‘yesterday’s news’ remains always ‘yesterday’s news’, and opportunities for a meaningful response or redress fade—quickly.

Patient choices tend to be at the forefront of public discussion on many aspects of health care. In the shadow of this discussion is the widespread concern in most countries over the needs of an ageing population. Added to this is the call to improve resource allocation to allow people to remain in their own homes and, if the option is available, to die there. The demands on informal or family caregivers has gained increasing attention also and added yet another dimension to the public discussion on meeting future demand for health-care and social services. Each of these issues should be considered ‘avenues’ to broaden discussion to encompass the provision and delivery of specialized end-of-life care.

Opportunities for community outreach come in many forms, particularly at the local or regional level, such as participating in public forums, speaking to special or public interest groups . . . and, of course, engaging the news media. Towards this end, a proven strategy has been to establish a pool of local experts, people who can speak with some authority on a given issue. Commonly referred to as a speaker’s bureau, this can be an invaluable community resource (for the news media also).

National ageing, home care or end-of-life care strategies are lacking in many, if not most, countries. For policymakers, each represents something of a political minefield and the real threat of political ‘suicide’. A cautionary note: in countries where there is government funding or resource allocation for hospice or palliative care, there is an ever-present risk when speaking out on end-of-life issues of being seen to ‘bite the hand that feeds you’. There can be negative consequences or repercussions if heard or seen to challenge or comment negatively on government action or inaction. This can present health-care professionals with both an ethical and moral dilemma. Understandably, they are guarded in their expressions of concern or criticism, opting to err on the side of caution. This has the potential for neutralizing opposing points of view.

It is important to establish a dialogue with key politicians, at the local, regional, and national level. Policy may emanate at, say, the national, state, or provincial levels of government, but resource allocation may be a shared responsibility with other levels of government, for example, municipal. While politicians are the public face of government, it is important to identify and connect with those individuals who advise or counsel politicians on policy, who are involved in researching and gathering background information on a given issue or topic, and who can help navigate the political system—most importantly at the ministerial level.

The news media stands as one of the principal arbiters of social attitudes on a broad range of issues; its selection and interpretation shapes public opinion. With this in mind, there is an understandable and widespread scepticism or reluctance on the part of many health professionals to engage with journalists or reporters. It can be a risky business and also a mixed blessing. It is possible, nonetheless, if not imperative to take part in public discussion and, through the news media, give the general public a chance to make up its own mind from a broader set of arguments and different points of view. A prerequisite is to monitor the news media—much in the same way a health professional monitors the literature—to keep abreast of current thinking.

Engaging the news media is a formidable challenge, particularly since it is becoming increasingly more fragmented with each advance in technology. Gone are the days of only a few major news outlets. And, there is a notable change in the calibre of journalists who might be assigned to a ‘health story’. Informed medical or policy writers, as examples, are not as commonplace as, say, a decade or two ago. There are, nonetheless, thoughtful elements in the news media, but a health professional may often be faced in an interview with a journalist with less than a general knowledge of the subject matter or issue in question. Brevity is invariably the requirement, most notably in the broadcast media where the ambiguous ‘sound bite’ seems the overriding order of the day. Inherent in this approach to news reporting is the probability of comments or information taken out of context.

A common technique used by news reporters is to ask a question, rapidly followed by two or three possible answers, in effect ‘managing’ the interview, for example:

Why do you think government is not prepared to commit to funding additional free-standing hospices? Is it because it is relying too heavily on the community for financial support . . . or, that the economic case for hospice has yet to be made?

This can flummox the subject being interviewed, who is faced with responding, not to the initial question, but to one or both of the fabricated answers, which are more often than not purely speculative. Lost may be the opportunity for a more accurate or truthful—less provocative—response. Another technique is to ask a ‘loaded’ question:

Is it true that as a consequence of government budget cuts, the hospital will reduce the number of desperately needed palliative care beds?

The response may indeed be a simple ‘yes’ (or, conceivably, ‘no’), but the broadcasted or published news item might read:

Physicians are critical of the government decision to close palliative care beds. Dr X said in an interview that the proposed budget cuts will mean reducing the desperately needed beds for dying patients.

With this in mind, it is critically important not to be diverted from the key points that need to be made. At the outset, stay focused, deliver the ‘bottom line’ first and then the background or rationale. Keep in mind also that there really is no such thing as ‘off the record’ and that the journalist you are talking with is not your ‘best friend’. Respect that the journalist has a job to do, but do not relax your guard. The watchword should always be preparedness.

The Internet and social media should be considered in the same context as the more conventional print and broadcast news media, with added reservations. While they offer a means of reaching a far wider audience, the Internet and social media function with few conventions or ‘rules of engagement’. They might be considered the ultimate in terms of opportunities for freedom of expression. In this technology-fixated age, the Internet and social media fit neatly Marshall McLuhan’s theory of ‘the medium is the message’, by which the medium influences how the message is received. Much is contradictory, distorted or one-sided, emotionally charged, inaccurate, unsubstantiated, or unverifiable. The Internet and social media are something of a ‘free for all’ in the exchange of information and ideas. Proceed, therefore, with guarded optimism.

While the public, politicians, and the news media may be more than familiar, if not personally acquainted, with mainstream medicine, and health-care and social services in general, end-of-life care remains largely unfamiliar territory. For one, it demands dedicating time with a patient or family in a system where time is more often than not at a premium. An example of its complexity is the psychosocial aspects of hospice and palliative care in, say, an ethnically diverse or multicultural society. Dying and death is not something that lends itself easily to a ‘tick box’ or ‘checklist’ mentality. Therefore, no matter with whom you are trying to communicate, one needs to develop a preparedness plan for each and every encounter or opportunity.

There are a number of different approaches to formulating such a plan. One that serves the purpose of giving realistic and understandable guidance to effective, empathetic communications asks and answers five key questions: ‘Who are we talking to?’, ‘Where are we now in their minds?’, ‘Where would we like to be?’, ‘How do we get there?’, and ‘How do we know we are right?’

Who are we talking to? (i.e. the ‘target’ audience)—the term ‘target’ is used only to characterize those people who are most likely to receive the intended message with sympathetic eyes or ears. Try to describe them demographically and psychographically. If you cannot with reasonable precision, research to find out who and what kind of people they are . . . and, in the case of politicians, what their position or stand is or has been on the issue or subject in question.

Where are we now in their minds? (i.e. perceptions)—this question should be answered in the language of the audience you are trying to reach. It is a summation of what you think the person or people you are trying to reach say or think about the issue you would like to address or discuss. Once again, it may be necessary to conduct research to answer this question with reasonable accuracy. A starting point at this stage of the process is to acknowledge a basic premise of communication: perception is fact.

Where would we like to be? (i.e. communications ‘objective’)—after your message has been heard or read, what response can realistically be expected from the communication?

How do we get there? (i.e. ‘strategy’)—if you think of the objective in terms of how you want your audience to respond, then the ‘strategy’ has to be what it is you say or do to create that response.

How do we know we are right? (i.e. ‘support’)—whenever possible support the answers to the first four questions. If you have done your homework before starting this exercise, you will constantly refer back to available information as the exercise progresses. If any answer is questionable supposition, decide that it should be checked out or researched. In any event, ‘How do we know we are right?’ is not a question you ask at the end of the exercise. It is one you ask all the way through: each answer to the four questions requires back-up support, a rationale. A reason why.

Engaging in a dialogue with the public, politicians, or the news media is challenging and requires careful consideration and planning. It demands dedicated time. It can indeed be a harrowing experience navigating the emotional and political terrain that is involved, but, ask yourself, who is better qualified to help shape both opinion and understanding, and policy development, with regard to end-of-life care?