http://bmj.com/cgi/content/full/326/7402/1291

BMJ  2003;326:1291-1292 (14 June)
 

PDF of this article Email this article to a friend Respond to this article PubMed citation Related articles in PubMed Download to Citation Manager This article has been cited by other articles Search Medline for articles by: Sweet, M. Alert me when: New articles cite this article

Collections under which this article appears: Patient - caregiver communication (including Patient education)

Good patient

Brandy, bridge, and other patient dilemmas

Melissa Sweet, journalist¹

¹ Sweet Communication, Maianbar, Sydney, NSW 2230, Australia sweetcom@tig.com.au

Many barriers confront patients and families who would like to take a more active role in health care. Australian healthcare journalist Melissa Sweet discusses her grandmother's case and other issues

	Introduction

Top Introduction Vulnerable patients How involved should we... References

 
My grandmother didn't want friends from the bridge club invited to her 90th birthday party last year. If her age became widely known, she worried that her standing—as a competitive player who takes her bridge very seriously—might be diminished. My grandmother is also mad about gardening, books, and film and has a wonderfully dry sense of humour. This becomes particularly evident about sundown, when she pours a hefty brandy or two while cooking dinner.

The family came up with all sorts of explanations when my grandmother began to complain of severe exhaustion last November. No wonder she was worn out; she was just back from a gruelling bridge competition several hundred kilometres away. Perhaps it was her heart; she'd been admitted to hospital with atrial fibrillation in July. Or maybe the years had finally overtaken her legendary stamina. She also had severe constipation. A medicines information line advised that one of the medications recently prescribed for bladder troubles—imipramine, oxybutynin, or estrone—was probably to blame.

By December, she could barely get out of bed. We knew it was serious; she wasn't worried about missing bridge and even had lost her appetite for brandy. Tests showed some problems with thyroid function, possibly due to the amiodarone she'd been taking since July, and low sodium concentrations. Despite phone calls to her specialists and visits to her general practitioner, it was difficult to get a satisfactory response to our fears that her medicines were making her sick. It also was difficult to know how hard to push; my grandmother was reluctant to do anything which might be seen as questioning her doctors' wisdom.

Eventually she agreed to get a second opinion. She really wasn't herself at this consultation, struggling to answer questions, and I was glad to be there to help. When the specialist advised that she cease all medications as side effects or interactions probably were to blame for her sudden decline, it was a huge relief that there was not a more sinister underlying condition.

My grandmother was happy to stop popping pills—something she's always hated doing anyway—but felt awkward about breaking the news to the "bladder man" of whom she is so fond. She made an appointment to apologise in person for stopping his medicines.

Within weeks, she was back at the bridge table, and I was left pondering how things might have ended up much worse. In her drowsy, confused state, my grandmother had been on track to have a fall and lose her prized independence. I also was left pondering how it is so much easier to be pushy on somebody else's behalf. Much of what I, as a medical journalist, write is encouraging readers to be more informed and active in managing their care. With Judy and Les Irwig, I've helped to write a book promoting healthcare decisions being based on evidence and patients' values.¹ But when it comes to negotiating my own care, I'm pretty pathetic. I've been seeing a physiotherapist for several weeks now for a sore shoulder and have been slow to ask pointed questions about the evidence for his treatment approach. I can see he already feels bad about my slow recovery.

	Vulnerable patients

Top Introduction Vulnerable patients How involved should we... References

 
Merrilyn Walton, who ran the unit investigating healthcare complaints in New South Wales before becoming an academic specialising in medical ethics, is a prominent advocate of patients assuming greater responsibility for their care and becoming more assertive. But when she recently helped her mother through a diagnosis of cancer and the subsequent treatment, her main role was to help to find a competent, caring doctor whom she trusted and didn't feel the need to question intensely.

At the recent launch of her book, Well Being: How to get the Best Treatment from your Doctor, Walton confessed to sometimes being a "compliant" patient.² When having treatment for a bad back some months ago, she agreed to a lignocaine injection but later regretted doing this without first asking some questions. "I wished I'd been able to say, do you mind if we just stop for a second and talk about that?" she says. "I think it's because I was undressed... when you're at your most vulnerable, it's not the place to have those engaged conversations."

This seems a key dilemma for those, like myself, who believe that patients have much to gain from becoming more involved in health decision making. When you're sick, miserable, and frightened it's difficult to even contemplate taking on such a role.

"One of the constant features of any sort of illness is the loss of a degree of your autonomy," says Miles Little, a retired surgeon now heading the Centre for Values, Ethics and the Law in Medicine at the University of Sydney. "You lose the capacity to make the choices you have when you're well. To say choices have to be based on the patient's autonomy is self defeating."

Emma Sayers, who has had cancer and works with Little, adds: "Even all my years of work in this area hasn't really changed my interaction with specialists or doctors, somehow the dynamic of being their patient—there's a power imbalance that can't be overcome."

	How involved should we be?

Top Introduction Vulnerable patients How involved should we... References

 
Even for well people, there are barriers. They and their health professionals may not support or appreciate the possibilities of a more active role for patients. Other, more practical issues—the long queue in the waiting room, for example—also come into play.

Nor is there agreement about what makes a "good" patient. For my grandmother, this meant not rocking the boat, an approach often encouraged by the language of medicine—urging patient "compliance" with treatment, for example. Jenny Doust, a general practitioner and epidemiologist at the University of Queensland, says it can be difficult to promote patient involvement when often health professionals and patients do not even share the same language: one speaks of potential harms and benefits of different options; the other thinks there's a "right answer" for their problem.

Betty Johnson, an Australian consumer health advocate, recently underwent heart surgery and says that the experience made her appreciate that patients need more than good information about risks and benefits. They also need help in navigating the maze of health and community services.

Phyllis Butow directs the medical psychology unit at the University of Sydney, which recently completed a qualitative study in which 20 people with cancer were asked about their views on decision making.³ Initially many said they wanted to be involved, but closer questioning showed that only a small proportion wanted to weigh up the evidence and make a decision themselves. "What they wanted to know was that they could trust this doctor to make the right decision for them," says Butow. "It calls into question the percentage of patients who really do want to be involved in decisions or what they mean when they say they want to be involved."

But the implication is not, says Butow, that health services should carry on their paternalistic ways. Given the wealth of evidence suggesting that patients do better if they are actively involved in their care, the message is that health services and professionals need to make it easier for patients to do this. Relatively simple strategies, such as decision aids, question prompt sheets, offering choices, and endorsing the importance of patients' values can make a difference. "Walking into a health service is like going to another planet where you don't know the rules," she says. "If you don't make those rules explicit and welcome people's involvement, they will assume the rules are against involvement."

Little and Sayers have developed a proposal for third party advocates, to help guide patients through systems that seem confusing and complex even for those familiar with them. Such advocates could help to improve patients' outcomes and satisfaction with care. They may be especially useful for elderly people and others at increased risk of running into difficulties with their health care.

Funding: None.

Competing interests: None declared.

Listen to the BMJ Round Table Debate: "Doctors as Sherpas"

	References

Top Introduction Vulnerable patients How involved should we... References

1. Irwig J, Irwig L, Sweet M. Smart health choices. St Leonards, Australia: Allen and Unwin, 1999.
2. Walton M. Well being: how to get the best treatment from your doctor. Annandale, NSW: Pluto Press, 2002.
3. Henman M, Butow PN, Brown RF, Boyle F, Tattersall MHN. Lay constructions of decision making in cancer. Psychooncology 2002;11: 295-306.[ISI][Medline]

This article has been cited by other articles:

				H. Bastian Just how demanding can we get before we blow it? BMJ, June 12, 2003; 326(7402): 1277 - 1278. [Full Text] [PDF]

PDF of this article Email this article to a friend Respond to this article PubMed citation Related articles in PubMed Download to Citation Manager Search Medline for articles by: Sweet, M. Alert me when: New articles cite this article

Collections under which this article appears: Patient - caregiver communication (including Patient education)

© 2003 BMJ Publishing Group Ltd