Practice dilemma - Should you withhold clinical information?

An 80-year-old man was admitted to a nursing home after suffering a mild stroke. He has made a good recovery and is mobile with the help of a walking frame.

He has developed renal failure. It has become clear that he will soon be referred to a nephrologist. His next of kin is his nephew who wishes that the uncle not be told about the renal failure, not be referred to a nephrologist, and not be considered for dialysis. How would you deal with this situation?

The patient and nephew may not fully understand what renal failure is and what dialysis entails (SPL)

A GP’s response
Dr Louise Warburton, a GPSI in rheumatology in Ironbridge, Shropshire
Renal failure is very common in the elderly and it is now more in the consciousness of general practice than it used to be.
What we are not told in this case is how bad the renal failure actually is.

Patients with estimated glomerular filtration rates as low as 20 seem to be able to manage symptom free and have no idea about their decline in renal function. It is often difficult to explain to such patients why they may need treatment when they feel so well.

I would question whether this gentleman actually needed referral to a nephrologist at all. This may be outside the control of the GP, however.

I would attempt to arrange a meeting with this man’s nephew, probably at the nursing home, with the patient present as well.

 I cannot discuss the patient’s medical problems and prognosis without his consent and I would first explain this to the nephew and the patient.

This will mean that the patient will be made aware of his renal failure. However, I would go on to explain that this is very common and that we need to seek the opinion of a nephrologist about further management.

The nephew is concerned about dialysis, but is probably not aware that the patient must be assessed first and may not even be thought suitable for dialysis. We do not know about any of his other co-morbidities.

I would stress that each step of the referral and management pathway will be undertaken with the involvement and consent of both the patient and his nephew.

I would seek to explore the nephew’s understanding of renal failure and dialysis and the prognosis for his uncle after his mild stroke. I suspect that he may be viewing the future very negatively and not be aware that his uncle could have many more years of good quality life ahead of him, with the right medical interventions.

I would also explore financial issues, as the nephew may be worried about this aspect of his uncle’s care or even be concerned about his inheritance.

The situation should be handled with sensitivity. It may be worth suggesting to the patient that he seeks legal advice or appoints an advocate to help him with his finances. Certainly he should have made a will and if he has not, then gentle suggestions that he should involve a solicitor will help to protect his financial and social interests.

A medico-legal opinion
Dr Angelique Mastihi, Medical Protection Society, medico-legal adviser
Autonomy is regarded highly in our society. It is the ability to decide not only what happens to our bodies, but also how we live.

Respect for patients’ autonomy is expressed in consent law; to impose or deny treatment without respecting a person’s wishes and right to self-determination is not only unethical, but illegal.

The issue central to this case is whether or not the patient is competent to make the decisions involved. Adults are assumed to have capacity to determine their medical care.

The Mental Capacity Act 2005, which came into force in 2007, sets out the legal framework to protect people who
lack capacity, and maximise their ability to make decisions or participate in decision making.

It states that a person must be assumed to have capacity unless it is established that they lack capacity.

If this gentleman has the necessary mental capacity then you cannot withhold information relating to his diagnosis from him.

It is then the patient’s decision whether or not to see a specialist and then, once fully informed of all the options, his decision whether or not to accept treatment.

However, if following assessment the patient is found to lack capacity then decisions must be made in his best interests.

These interests are not medical interests alone, and when coming to a decision the Act sets down a checklist of issues to be considered.

This includes seeking the views of the people closest to the patient, as well as the views of an attorney or deputy.

Obviously, situations such as these can be difficult to manage and should be dealt with as sensitively as possible.

Remember you owe a duty of care and respect to your patient.

A patient’s response
Rosemary Humphreys, a member of the Patient Partnership Group
It is necessary to understand why the nephew does not wish his uncle to be referred for further treatment.

Perhaps the patient has given clear instructions that he does not wish to receive further treatment following a stroke. This seems unlikely as he has already mobilised himself.

There is no mention of dementia, which could prevent the patient making an informed decision. Even if the nephew holds power of attorney this may not entitle him to withhold treatment.

The patient has a right to know about his condition and the options. If he clearly indicates that he does not wish to be treated then that will have to be addressed.

The nephew may feel that fur­ther treatment would be too stressful for his uncle or that dialysis may affect his uncle’s quality of life. There may be religious objections to dialysis, logistical problems in accessing treatment or an elderly partner who would be left alone for long periods.

If these situations arise then that would be the time to consider other options.

Initially, however, the nephew cannot be allowed to let his uncle’s health deteriorate if he can be treated successfully.

Recent case law has established that it is for the clinician to decide what treatment options are clinically indicated.

The patient should be told the situation and see a nephrologist who can explain what the treatment will entail.

There needs to be a shared decision between the patient, clinicians and relatives. Investigate whether there are other family members who could be involved in this decision.

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