Editor’s note: All illustrations for this story are paintings by Canadian artist Robert Pope, who died of Hodgkins Disease after living with it for 10 years. He did a series informed by his illness and hospital experience, gathered in the book Illness & Healing: Images of Cancer. Permission to use these images is thanks to the generosity of the Robert Pope Foundation.
By Barry R. Ashpole
IAHPC Board Member
Two universal issues to have emerged in recent years continue to generate a great deal of attention: the future provision and delivery of health care and social services to the population at large; and meeting the needs of aging populations, people 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. Against this backdrop is the increasing attention on all fronts given to the quality of care and support for those living with a terminal illness, both patients and their families or loved ones.
In this environment, there are differing points of view regarding language usage, particularly with patients, families, or lay people in general. “Hospice” and “palliative care,” for example, are associated in the minds of many people with dying and death and, as a consequence, are more often than not 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 and understanding of what is hospice and palliative care.
The challenge, however, can be compounded by another aspect of language usage: how we voluntarily restrict the words we use. 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, 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, a “conspiracy of silence” often prevails as death approaches—or, for that matter, whenever confronted with crises in our lives—which is nothing more than a manifestation of a lifelong discomfort with the acceptance of the inevitable 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—to say what we need to say, and to hear what we need to hear—with empathy and without hurt or hurting?
An often overlooked and underappreciated component of language is nonverbal communication. A commonly cited “equation” suggests that communication is 7% verbal, 35% body language, 35% facial expression, and 23% tone. We are not always conscious of how and what we communicate through our body language, facial expressions, or in our tone, regardless if we are speaking one-on-one, addressing a large audience, or meeting with a small group of people.
Communication is (in and of itself) a therapeutic intervention. The quality of care for the terminally ill patient rests almost entirely on empathetic and meaningful two-way communication between its recipient and their care providers. It is essential to build a therapeutic relationship, facilitate informed decision-making, and effect a positive change in the illness experience. Playwright George Bernard Shaw said that “the single biggest problem in communication is the illusion that it has taken place.” In almost every situation a person will recall or retain only 25% of what they hear…and, within three to five days they will likely have forgotten half that. Clearly then, there is a direct correlation between the quality of care and the quality of communication. Meaningful communication requires that the information be fully, successfully received.
Food for thought. To quote scientist George Washington Carver (1864-1943): “How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in life you will have been all of these.”
Editor’s note: The primary source for this feature is Barry Ashpole’s contribution to the 5th edition of the Oxford Textbook of Palliative Medicine (2015), “Communication with the Public, Policymakers and the Media.”