A role for advocacy in general medicineBMJ 1999; 318 doi: https://doi.org/10.1136/bmj.318.7186.819 (Published 20 March 1999) Cite this as: BMJ 1999;318:819
My 93 year old mother announced her forthcoming death with equanimity and surprising accuracy, as she told a friend, “Don't bother coming next week, dear; I won't be here.”
Two days later she had a severe stroke which robbed her of speech and most movement, but not her intellect. Despite her clearly indicated wish to remain in the rest home and the home's willingness to care for her, the locum insisted that she be admitted to the geriatric ward of the general hospital. For the next two weeks she suffered all that modern medicine could throw at her in the face of a clearly terminal prognosis and her admittedly incoherent protests. It was her worst nightmare come true. When I visited, tears trickled down her cheeks, she grasped my hand with her one good hand, and clearly conveyed her desperate wish for the drips and tablets to stop, and for the daily lifting out of bed to sit slumped in a chair to cease.
My mother was admitted to hospital against her will
My efforts to convey this to staff were met by either kindly soothing words—“poor old thing, she's probably a bit depressed”—or hostile suspicion. Some clearly thought that I was intent on matricide by proxy. Finally, after several requests for an interview, the consultant telephoned me at work, asking if it was true that I did not wish my mother to receive treatment. I told him that my mother could still make her own decisions, if he would just communicate with her. Subsequently, active treatment stopped and, shortly after, my mother died in her sleep.
Two years and one hastily made living will later, I often reflect on those few weeks. As a psychiatrist, I am painfully aware of the conflicts that can arise when considering the rights of patients to accept or refuse treatment that caring professionals feel they require. We are, perhaps, fortunate in having the Mental Health Act to provide relatively clear procedures regarding protection of the rights of detained patients. But, there seems to be no concern for those unable to exert their rights by virtue of physical rather than mental incapacity. My mother was admitted to hospital against her will, de facto detained, and treated also against her will. If she had been a psychiatric patient all hell would have broken loose. So why is there this apparent double standard?
Perhaps it reflects characteristics of psychiatric practice. Psychiatrists are accustomed to having their views questioned by every member of the multidisciplinary team, the patient, their relatives, tribunals, and solicitors. Most accept the need for such scrutiny although it can be time consuming and stressful. The patient's views and wishes have become, rightly, paramount in psychiatric practice although not without many years of effort from patients' rights movements. There seems to be no equivalent in general medicine, unless you count the patient's charter, which seems to be toothless. This document lay on my mother's bedside table. Her blindness prevented her from reading it, none of the named nurses seemed to ever actually work on her ward, and the rest of it was irrelevant to her situation.
Psychiatric patients are also different. They may be brought to the doctor against their will, are often suspicious of the professionals, and may not agree that they need help. Generally lacking physical pain or fears of imminent death, they can and frequently do vote with their feet. Although the general surgeon or physician may feel able to discharge those who are unwilling to cooperate, this may not be an option for the psychiatrist whose patients may present a risk to others as well as themselves.
I am sure there was no deliberate intention to deprive my mother of her basic rights. But she was on an acute geriatric ward, which was for treatment, and death was the enemy. The fact that the enemy seemed to be winning, much of the time, seemed merely to stimulate further resistance from the embattled staff. There was also clearly a concern, hinted at by the consultant, that in these litigious times any failure to do everything possible, rather than everything desirable, might expose them to legal action from discontented relatives.
My mother's experience is not unique, and neither is my residual guilt for not preventing her prolonged suffering. This is not a plea for euthanasia, to which I am totally opposed. But it does seem to me that there is a group of people, often but not always elderly, in possession of mental capacity but lacking the physical capability to exercise their rights, who need help and support in having their wishes and views regarding hospital admission and subsequent treatment considered. The Mental Health Act does not apply, but perhaps an advocacy system could support the rights of this patient group, as it has done for the mentally incapacitated.