ETHICAL DEBATE

SEX, DRUGS, AND THE INVASION OF PRIVACY

Patients who are in hospital for long periods may want the same level of
privacy they have in their own homes. A clinical team from John Radcliffe
Hospital Oxford describes the case of a young man with multiple sclerosis
who was suspected of taking cannabis while in hospital for respite care. An
ethicist, nurse, doctor, and manager from the Multiple Sclerosis Society
give their views on the issue.

RESPECT FOR PRIVACY AND THE CASE OF MR K

Julian Savulescu, Rachel Marsden, Tony Hope

In Britain, the patient's charter specifies standards of rights and dignity
for patients. Little guidance is given about what this means in practice,
other than the desirability of providing separate washing and toilet
facilities for men and women in hospital. Respect for privacy, however,
goes far beyond this. Here we consider the case of Mr K (box).

Mr K And The Cannabis Cake

Mr K, a former carpenter and artist, is 35 years old. He has multiple
sclerosis, which was diagnosed 10 years ago. Mr K has lived with his mother
since his wife left him seven years ago. He needs full assistance with
activities of daily living, and this is provided by his mother. Respite
care is arranged at a rehabilitation hospital.

Mr K's mother asked if her son could smoke cannabis in the rehabilitation
hospital. "He has smoked since he was a teenager. I was against it for a
long time, but it's one of the few things he can enjoy now. He gets very
agitated if he doesn't get his dope, and his spasms are much worse." After
consultation with colleagues, the ward sister told Mr K's mother that staff
could not knowingly allow him to consume illegal substances on hospital
premises.

Mr K was admitted to hospital. Every day his mother brought him a cake,
which he ate with relish. One nurse suggested that the cake might contain
cannabis. The staff were in a quandary; should they investigate further?

Hospitals And Privacy

Privacy is often at risk in hospital. Patients may feel threatened if staff
ask them unnecessarily personal questions or if parts of their bodies are
exposed unnecessarily during physical examinations. Confidentiality, one
aspect of privacy, can be breached when there is unwarranted access to
facts about patients. Yet another side of privacy is the freedom to engage
- - in private - in activities that are important to us.

In this paper, we wish to highlight the importance of privacy in two groups
of patients - those admitted to hospital with terminal diseases and
chronically ill patients who spend long periods in hospital. For these
people the hospital may be home, and they may need enough privacy to engage
in important personal relationships and other activities that they value
highly.

If hospital is home, attempts should be made to allow patients the same
privacy they would enjoy at home. This includes providing space and time
that are their own, so that they can do what they want, free from
interference. Sexual relations between consenting adults would not
necessarily be precluded. Important limitations to privacy exist, however,
and special constraints apply in a hospital (box).

Limitations On Patients' Privacy In Hospital

Patients should not be free to pursue interests that harm or interfere with
others. Private behaviour should not become public in a way that seriously
offends others or incites others to break the law.

Patients generally should not be free to pursue interests that cause
serious harm to themselves.

Provision of private space and time must be consistent with the proper
delivery of health care and must not put an excessive burden on the
available resources.

Privacy And The Use Of Illicit Drugs

Illegal behaviour raises further issues. Under section 8 of the Misuse of
Drugs Act 1971, it is illegal for the occupier of a premises knowingly to
permit the consumption of illicit drugs. The "occupier" refers to someone
with the power to exclude people from the premises, and in a hospital this
probably includes doctors and senior nurses. Health professionals may be in
breach of the law if they knowingly allow the consumption of illegal drugs.
However, an important difference exists between shutting one's eyes to an
obvious breach of the law and respecting privacy.

Privacy is vitally important. The possibility that a patient may be
consuming illegal drugs in hospital should not, by itself, justify invading
their privacy, just as the possibility that patients might be using illicit
drugs at home does not warrant unlimited access to their private lives.

In the case of Mr K, it would be morally right to ensure that he and his
mother are aware of the risks and benefits of using cannabis. But
investigating whether the cake contains cannabis would be wrong unless
staff believe that there is evidence of sufficient risk of harm to Mr K or
to others that would justify intrusion into what is a private matter.

Conclusion

We expect privacy in our own homes and the right to behave in ways that
others might disapprove of without interference. Healthcare professionals
should provide such a level of privacy for patients who spend a long time
or the end of their lives in hospital. For these patients privacy may be
one of the few freedoms they can enjoy, and it is relevant to ask them how
much privacy they would have in their own home. Good reasons are needed for
accepting a lower level of privacy in hospital.

Oxford Radcliffe Hospital, Oxford OX3 9DU
Julian Savulescu, clinical ethicist

Churchill Hospital, Oxford OX3 7LJ
Rachael Marsden, unit support nurse

University of Oxford Medical School, John Radcliffe Hospital, Oxford 0X3 9DU
Tony Hope, reader in medicine, honorary consultant psychiatrist

Correspondence to: Dr Hope
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COMMENTARY: SILENCE MAY BE THE BEST ADVOCACY

Ruth Carlyle

Healthcare professionals and voluntary organisations supporting people with
medical conditions act as advocates upholding the rights of their clients.
In the case of Mr K, Savulescu et al suggest that the best advocacy can
sometimes be to remain silent.

Cannabis And Multiple Sclerosis

The Multiple Sclerosis Society is often contacted by people who openly
admit that they are breaking the law - people who are otherwise law abiding
and would never have considered taking an illegal substance if they had not
believed it might help them to cope with their symptoms, such as spasms,
bladder control, or fatigue. Some people indicate that they have benefited
from cannabis; some say that taking cannabis has had no impact on their
lives with multiple sclerosis; and others report that it has made some of
their symptoms, such as balance, worse. When we are contacted by people who
volunteer the information that they are breaking the law, we respect their
privacy as adults who have chosen to take cannabis for therapeutic benefit
in their own homes.

Privacy In Hospital ... And At Home

Choices in life can be restricted severely by multiple sclerosis, and any
additional curtailment of independence is therefore important. The greater
the threat to privacy, the more it is prized. How far then should privacy
extend? In a hospital, the ethical dilemma outlined by Savulescu et al is
more complex. The authors suggest that the rule of thumb which we should be
using is the degree of privacy that a person would experience in their own
home. While Mr K was living with his mother, it is unlikely that any
outsider would have noticed that Mr K was eating or smoking cannabis if he
chose to hide the fact. Nevertheless, Mr K's privacy at home would be
compromised by the closeness of his relationship with his mother and his
need to be cared for by her. Privacy is not absolute at home or in
hospital, but relationships operate at different levels according to
context. Professional carers should not assume that they have the right to
be as intimate as a family carer; the level of relationship should be more
like that of a guest or colleague sharing a part of a person's life.

Caring for people has to involve concern for them as individuals with the
right to make choices; it means not asking questions which breach their
privacy. In this situation, ignorance may not be bliss, and it is certainly
not an easy option, but it respects the privacy of the individual as a
person rather than a patient.

Multiple Sclerosis Society of Great Britain and Northern Ireland, London
SW6 1EE

Ruth Carlyle, manager, information and education

email: RCarlyle@mssociety.org.uk
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COMMENTARY: PATIENTS SHOULD HAVE PRIVACY AS LONG AS THEY DO NOT HARM
THEMSELVES OR OTHERS

George J Annas

Medical care requires the invasion of privacy. Patients must expose their
innermost thoughts, their bodies, and their sickrooms to strangers. But to
protect human dignity, health providers should limit invasions to those
necessary to accomplish the goals of their patients.

Privacy Of Personal Space

The case of Mr K centres on the privacy of personal space. The critical
sentence in the case study of Savulescu et al begins "If hospital is home."
The hospital is literally home if, as happens in many nursing homes in the
United States, the patient is expected to live there until death. In these
cases we should ensure that patients live their lives as they see fit,
provided their actions do not seriously harm others. For example, sex with
a consenting adult (with the door closed), reasonable amounts of alcohol,
choices in food, ability to keep a locked drawer, freedom to take walks
outside, guests of their own choice, telephone services, and the like
remain important for many hospital patients.

Yet the hospital is not usually home, and very few people would like it to
be. Moreover, the contemporary trend is to transform homes into hospitals,
rather than hospitals into homes.

Should ethical questions be treated as legal problems?

Mr K is in an intermediate position. He has a home, but is admitted
periodically to hospital for respite care. Should he be deprived of the
cannabis that his mother supplies him with at home? The reasoning in this
case illustrates a pervasive and fundamental problem in modern medical
ethics - the tendency to treat all ethical questions as legal problems.(1)
Thus, the nursing staff and the case presenters rely almost exclusively in
their analysis on their personal (I take it, non-legal) interpretation of
English law. We are told, for example, that it is against the law if the
staff "knowingly allow the consumption of illegal substances on hospital
premises," and that section 8 of the Misuse of Drugs Act 1971 forbids the
"occupier of a premises knowingly to permit the consumption of illicit
drugs."

A Pragmatic Approach To Privacy

Whether the law actually applies here requires an extensive legal analysis.
While there is no explicit exception for medicinal use of "illicit
substances," I would be very surprised if a prosecution has ever been
attempted of a doctor or nurse who made a reasonable judgment that use of
cannabis in circumstances such as these should be allowed. (And the
"premises" in section 8 probably apply to the venues of parties and other
social gatherings, not hospitals.) As in all decisions concerning medical
ethics, the focus should be on the patient and his or her wellbeing. If
allowing his mother to supply cannabis in cake helps medically, does not
harm any other patient or staff member, and is what Mr K wants, it should
be permitted.(2,3)

Finally, I would revise the three proposed limitations on patients' privacy
by deleting the third altogether (resource allocation is really a separate
issue) and combining the first and second. Thus, patients should be free to
pursue their own interests and activities so long as this pursuit does not
harm others or cause serious harm to themselves.

Health Law Department, Boston University School of Public Health, Boston,
MA 02118-2394, USA

George J Annas, professor of health law

email: annasgj@bu.edu

References

1 Annas G J. Standard of law: the law of American bioethics. New York:
Oxford University Press, 1993.

2 Kassirer J P. Federal foolishness and marijuana. N Engl J Med
1997;336:366-7.

3 Annas G J. Reefer madness: the federal response to California's medical
marijuana law. N Engl J Med 1997;337:435-9.
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COMMENTARY: NURSES SHOULD RECOGNISE PATIENTS' RIGHTS TO AUTONOMY

Pippa Gough

When people become dependent on others for care, their choices and actions
may be affected and channelled by their carers' moral judgments and values
about what is good and right. Although this extends across daily living, it
is brought into sharp focus in relation to two key areas - the choice to
break the law and the freedom to have sex as one wishes.

Although the case of Mr K highlights the former, in this instance the
desire to use illegal drugs, the issues raised are equally applicable to
the second area concerning sex and sexuality. Ultimately, we are discussing
the principles underpinning the patient's right to autonomy and the nurse's
obligation to maintain and promote this.

Patients' Autonomy Underpins Professional Practice

Nursing has struggled as much as any of the professions to shake off the
practices of paternalism, the creation of dependency, and coercion, however
subtly or benignly these are presented. We have probably been successful in
raising the debate even if we have not influenced completely the way we
deliver care.

The nurses' code of professional conduct, which provides the fundamental
framework for professional practice, has strongly influenced these
changes.(1) Recognition of a patient's autonomy underpins the code. At its
most fundamental, this means respecting individuals' choices concerning
their lives and, where necessary, providing an environment of privacy and
confidentiality so that these choices can be pursued.

Personal Privacy And Public Peril

The limitations to a nurse's duty of care in this respect are tempered only
by the balance between the protection of personal privacy and the threat of
public peril. In other words, this duty of care extends beyond the
individual to society, and nurses are accountable for their actions in
terms of each. The dividing line between the two, however, is rarely clear
and dilemmas abound. Moreover, the nurse's own values may colour his or her
interpretation of what might infringe the public interest, especially if
this involves unlawful activity.

In the case of Mr K, the possible consumption of cannabis within the ward,
which is after all his home during the respite period, does not seem to
threaten the public interest in the slightest. Protection of Mr K's privacy
therefore remains paramount. The nurses involved are not sure that cannabis
is being consumed, and as this knowledge might affect their legal position,
they should investigate no further unless this may present problems in
respect of potentially harmful drug interactions. They should respect Mr
K's right to consume cannabis if he wishes, and to do so on the ward,
without further questions being asked. Promotion of autonomous action in
relation to pursuing sexual relationships should be dealt with similarly.

Royal College of Nursing, London W1M 0AB
Pippa Gough, assistant director nursing policy

email: pippa.gough@rcn.org.uk

Reference

1 United Kingdom Central Council for Nursing, Midwifery and Health
Visiting. Code of professional conduct. London: UKCC, 1992.
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COMMENTARY: HOSPITAL CAN NEVER BE HOME

Michael Saunders

The problem is that hospitals are not home, and never can be. The
development of units for young disabled people in the 1960s and 70s raised
hopes that homely environments could be created within the NHS. These
aspirations were not realised; nor were they realistic. This has led to
moves to create small family units in community settings and the provision
of adequate facilities to maintain people in their own homes. Regrettably,
facilities and resources remain limited and people are still admitted to
hospital for respite care. Unless respite care involves assessment or
treatment, hospitals of any sort are an inappropriate environment for most
people with chronic neurological disease.

Underlying the question of the nature and use of hospitals is the wider
issue of the purpose of the NHS. The NHS is probably not there to provide a
"home," however much we may want to transport home life into an NHS hospital.

Mr K's Habit Might Distress Others

Cannabis is still illegal, although many people do smoke it. Whether it is
a useful drug in multiple sclerosis is a matter for debate, but it is not
prescribed officially. Although the ward staff may be sympathetic to Mr K's
predicament, they cannot allow him to smoke cannabis. Public servants are
obliged to stay within the law and making exceptions could lead them down
the "slippery slope" of acquiescing to all sorts of illegal practices.
Apart from this, the environment of many rehabilitation units would mean
that Mr K's smoking of cannabis would impinge on the privacy of others, who
might find his habit distressing.

Eating cake, however, seems harmless enough. The staff are certainly not
detectives and if Mr K eats cannabis cake they should have no means of
finding out. The relationship between Mr K and staff should be one of
mutual trust, however, which places an obligation on Mr K and his mother
not to deceive the unit once the matter has been discussed and permission
refused.

Sexual Relationships Are Important To Disabled People

Sexual relationships in hospital are a problem because of lack of privacy.
There is no reason why sexual relations should be barred in hospitals,
providing the privacy and feelings of others are protected. This can be a
very important part of the life of someone with a chronic disability. The
failure to provide facilities for sexual relationships may be a reflection
of the attitudes and perceptions of able bodied staff to people with
disabilities.

Anandgiri, Thorpe Underwood, York YO5 9ST
Michael Saunders, consultant neurologist

email: Michael.Saunders@btinternet.com