Sharon - Patient and Family Collaboration or Professional Control

Sharon - SSTattler

Diane’s stories about dealing with the health system in the United States made me think of this older article. There is lots of talk about patient provider partnerships or giving the patient the knowledge and expertise to make decisions and take control of their health, but as Sally Thorne says, “The expectation is that the patient as a full partner in health care decisions, ….the experiences of persons living with chronic illness confirm that this paradigm shift is not yet apparent in many health care relationships.”

I read “Attitudes toward patient expertise in chronic illness” in 2000, and it prompted me to check to see what Sally Thorne’s writes on a regular basis.  Sally is one of the most cited nursing authors in Canada.    Recently she has been writing about communication in cancer care.  Like this article, in which she has many positive things to say about the communication, she believes there is lots of room for improvement.  If she thinks communication in cancer should be improved, I think we should ask her to have a look at stroke.  I wonder what she would think of Diane’s experiences.

Good communication is critical to patients understanding of their condition. It ensures that they have the opportunity to collaborate with health professionals to make decisions about the appropriate treatment for them.

In this paper, the authors looked at two quite different chronic diseases — Type I Diabetes (a socially legitimized chronic disease) and Environmental Sensitivities (a disease which is currently treated with considerable scepticism).  Their purpose was to detect common underlying health professional values and attitudes that powerfully influence the experience of living with and negotiating health care for a chronic illness.

Another way to do this might be to compare communication with people with so-called life-style diseases like obesity, lung cancer, or COPD and someone with a condition that they cannot be blamed for causing.

In this study the general pattern of health care interactions described by all participants was characterized by a pervasive attitude of disbelief in their competence to make decisions on their own behalf. This attitude created a complex interactional dynamic that detracted from mutual trust and effective relationships.

“They sense your distrust of them. You can't disguise it. You have known what it is like to be given wrong advice, to be discounted as not knowing anything. So you enter the office on the defensive. Ready to do battle. They react by being arrogant or cold. You trust them even less. It becomes a vicious circle.

The following themes related to this thesis:

1. Retention of expertise: Whether or not they had any actual expert advice to offer, patients reported that many professionals cling to the role of expert within the health care encounter.
2. Control of information: A related manifestation of health care attitudes occurred in the context of controlling the information to which the patient had access.
3. Assumptions about biomedical superiority: Individuals with chronic illnesses typically found that, although they understood illness in a rather holistic and global sense, their health care professionals had little appreciation for those aspects of illness beyond the realm of what biomedical science makes rational.
4. Privileging disease information over quality of life.  Although health care professionals are ostensibly interacting with the individual who happens to have a disease, patients often reported that health care professionals treated them instead as diseases who happen to be carried by individuals.
5. Psychological labelling of patient behaviour: A common feature of the chronic illness experience was having one's physical symptoms interpreted as signs of psychological problems.
6. Assumptions about the meaning of non-compliance: As is common in all chronic illness experiences, when the participants attempted to modify their adherence to prescribed regimens in order to live as well as possible, their efforts were typically met with considerable resistance and suspicion by health care professionals.
7. Punitive gatekeeping: While some elements of the health care professional attitudes reported were depicted as merely a nuisance or an inconvenience to these persons with chronic illness, the accounts of individuals with both IDDM and ES emphasized that many of the decisions over which professionals seemed to have absolute control could have significant untoward consequences.

This article is 12 years old.  Has this been your experience?  Please let us know about your great experiences too! 

Read the article:

• Sally E. Thorne, Kerstin Ternulf Nyhlin, Barbara L. Paterson. Attitudes toward patient expertise in chronic illness. International Journal of Nursing Studies 37 (2000) 303±311.