A friend of ours, who is both a doctor and a cancer patient, has sent
us a copy of the article 'Patients and medical power' in your issue of
25th August 2001. We are grateful to Richard Canter for his analysis of
the ways in which A (the doctor) is able to influence the balance of power
between her/him and B (the patient). We would like to look at the role of
B in this relationship, and those of C and D also.
When presented with the diagnosis of a life-threatening illness, such
as cancer, both patient and partner are assailed by powerful emotions:
crippling fear, rage and grief. How they deal with them depends, of
course, not only upon their individual psychological make-ups but, also,
upon the extent and manner in which the information about diagnosis,
prognosis and the effects, both beneficial and adverse, of treatments are
conveyed.
The authors recognise that the patient may be overwhelmed, want the
doctor to take charge and to decide which treatments to provide. But what
can be done about doctors who always take this approach, regardless of the
patient's wishes? Training in listening skills, as well as communication
skills, would be a good start.
And what can be done to encourage patients to empower themselves?
Patients need to be valued, acknowledged as individuals rather than as a
set of symptoms on legs, and actively listened to - to be encouraged to
tell their stories - and to be given full and frank answers to all and
only the questions they ask. Doctors simply don't have the time - but C
(another patient/support volunteer) may well do.
It was for these reasons that one of us, a cancer patient, founded a
national charity The Prostate Cancer Support Association (PSA) in 1997.
There is a helpline and local groups to listen to, inform and support
callers, whether patients, partners, family members or friends. One should
never under-estimate the immense affirmation that can result from being
actively listened to.
But there is, not infrequently, the need for a fourth person D (a
patient advocate) whose function is not only to support the patient in
deciding what s/he wants from health and other services but also in
expressing those needs clearly and effectively. One of us has set up and
manages an Advocacy Service for patients with mental health problems. On
many occasions, cancer and other patients could also benefit from access
to such a service.
Unfortunately, health service workers often, initially, look upon
patient support groups and patient advocacy services with distrust and
suspicion, viewing their activities as likely to undermine their
professional standing. Later, they frequently come to appreciate how they
can complement and facilitate their roles.
If Alan Milburn really wants power to "shift decisively in favour of
the patient", then he should establish a Patient Advocacy Service for all
patients which is truly independent (unlike PALS).
He should also initiate a review of mental health service delivery
that goes far beyond simply re-framing the Mental Health Act 1983. The
review would do well to consider the contracts of consultant psychiatrists
and their relationships to the Trusts for which they work, their
colleagues and, not least, their patients. Both the national shortage of
psychiatrists and the nature of their contracts ensure that they are
highly autonomous and largely unaccountable to anyone. This situation is
thoroughly unacceptable because it plays directly into the worst aspects
of the model delineated by Richard Canter; it leaves patients reliant upon
their consultants' goodwill and their ability to reflect upon both their
own practice and those of their junior doctors. In too many instances,
both these qualities are almost completely lacking.
We heartily agree with Richard Canter's statement that "a little more
honesty on the subject wouldn't go amiss". Make that a lot and add a
measure of humility. And it applies to us all: patients, doctors, nurses,
health service managers and, last but not least, politicians.
Rapid Response:
Patients, Doctors and Power
Dear Sir/Madam,
Patients, Doctors and Power
A friend of ours, who is both a doctor and a cancer patient, has sent
us a copy of the article 'Patients and medical power' in your issue of
25th August 2001. We are grateful to Richard Canter for his analysis of
the ways in which A (the doctor) is able to influence the balance of power
between her/him and B (the patient). We would like to look at the role of
B in this relationship, and those of C and D also.
When presented with the diagnosis of a life-threatening illness, such
as cancer, both patient and partner are assailed by powerful emotions:
crippling fear, rage and grief. How they deal with them depends, of
course, not only upon their individual psychological make-ups but, also,
upon the extent and manner in which the information about diagnosis,
prognosis and the effects, both beneficial and adverse, of treatments are
conveyed.
The authors recognise that the patient may be overwhelmed, want the
doctor to take charge and to decide which treatments to provide. But what
can be done about doctors who always take this approach, regardless of the
patient's wishes? Training in listening skills, as well as communication
skills, would be a good start.
And what can be done to encourage patients to empower themselves?
Patients need to be valued, acknowledged as individuals rather than as a
set of symptoms on legs, and actively listened to - to be encouraged to
tell their stories - and to be given full and frank answers to all and
only the questions they ask. Doctors simply don't have the time - but C
(another patient/support volunteer) may well do.
It was for these reasons that one of us, a cancer patient, founded a
national charity The Prostate Cancer Support Association (PSA) in 1997.
There is a helpline and local groups to listen to, inform and support
callers, whether patients, partners, family members or friends. One should
never under-estimate the immense affirmation that can result from being
actively listened to.
But there is, not infrequently, the need for a fourth person D (a
patient advocate) whose function is not only to support the patient in
deciding what s/he wants from health and other services but also in
expressing those needs clearly and effectively. One of us has set up and
manages an Advocacy Service for patients with mental health problems. On
many occasions, cancer and other patients could also benefit from access
to such a service.
Unfortunately, health service workers often, initially, look upon
patient support groups and patient advocacy services with distrust and
suspicion, viewing their activities as likely to undermine their
professional standing. Later, they frequently come to appreciate how they
can complement and facilitate their roles.
If Alan Milburn really wants power to "shift decisively in favour of
the patient", then he should establish a Patient Advocacy Service for all
patients which is truly independent (unlike PALS).
He should also initiate a review of mental health service delivery
that goes far beyond simply re-framing the Mental Health Act 1983. The
review would do well to consider the contracts of consultant psychiatrists
and their relationships to the Trusts for which they work, their
colleagues and, not least, their patients. Both the national shortage of
psychiatrists and the nature of their contracts ensure that they are
highly autonomous and largely unaccountable to anyone. This situation is
thoroughly unacceptable because it plays directly into the worst aspects
of the model delineated by Richard Canter; it leaves patients reliant upon
their consultants' goodwill and their ability to reflect upon both their
own practice and those of their junior doctors. In too many instances,
both these qualities are almost completely lacking.
We heartily agree with Richard Canter's statement that "a little more
honesty on the subject wouldn't go amiss". Make that a lot and add a
measure of humility. And it applies to us all: patients, doctors, nurses,
health service managers and, last but not least, politicians.
Yours truly,
Angus W Earnshaw, BSc
Founder, Prostate Cancer Support Association
Philip H M Reilly, MA, Dip Psych
Patient Advocacy Service
Manager
Competing interests: No competing interests