Education and debate

Sex, drugs, and the invasion of privacy

Respect for privacy and the case of Mr K

Commentary: Hospital can never be home

Commentary: Silence may be the best advocacy

Commentary: Nurses should recognise patients' rights to autonomy

Commentary: Patients should have privacy as long as they do not harm themselves or others

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, clinical ethicist,  Rachel Marsden, unit support nurse,  Tony Hope, reader in medicine, honorary consultant psychiatrist. 

^a Oxford Radcliffe Hospital, Oxford OX3 9DU, ^b Churchill Hospital, Oxford OX3 7LJ, ^c University of Oxford Medical School, John Radcliffe Hospital, Oxford 0X3 9DU

Correspondence to: Dr 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).

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 engagein privatein activities that are important to us.

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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).

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.   

Commentary: Hospital can never be home

Michael Saunders, consultant neurologist. 

Anandgiri, Thorpe Underwood, York YO5 9ST

Michael.Saunders{at}btinternet.com

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.

Commentary: Silence may be the best advocacy

Ruth Carlyle, manager, information and education. 

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

RCarlyle{at}mssociety.org.uk

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 lawpeople 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.

Commentary: Nurses should recognise patients' rights to autonomy

Pippa Gough, assistant director nursing policy. 

Royal College of Nursing, London W1M 0AB

pippa.gough{at}rcn.org.uk

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 areasthe 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.

References

1. United Kingdom Central Council for Nursing, Midwifery and Health Visiting. Code of professional conduct. London: UKCC, 1992.

Commentary: Patients should have privacy as long as they do not harm themselves or others

George J Annas, professor of health law. 

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

annasgj{at}bu.edu

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.

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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 ethicsthe 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.

References

1. Annas GJ. Standard of law: the law of American bioethics. New York: Oxford University Press , 1993.
2. Kassirer JP. Federal foolishness and marijuana. N Engl J Med 1997; 336: 366-367[Free Full Text].
3. Annas GJ. Reefer madness: the federal response to California's medical marijuana law. N Engl J Med 1997; 337: 435-439[Free Full Text].