PI Brief Update

Terminal Illness: Rights of the Dying - Dr Mark Burgin

06/08/25. Dr Mark Burgin considers the ethics of whether those with terminal illness should have greater freedom to make decisions in hospitals.

The courts are increasingly being used to prevent dying patients from leaving hospital. The reasons given are often that the person who is dying does not have capacity. In other cases this argument does not apply and it is difficult to understand the reasoning. When contrasted with cases where treatments are withdrawn to allow people to die this approach appears to be paradoxical.

The best interests approach is arguably overused in those who are dying. As the doctors are not trying to prevent the person from dying it is unclear how staying in hospital is in best interests. Even if the quality of care is as good as that which the dying person would receive at home hospitals are unpleasant places. The bright lights, noises and restricted visiting make the experience tough at times.

The decisions appear to be based upon scientific rather than humanistic principles. The doctors’ arguments in these cases discuss ‘harm’ as if it is obvious that having more symptoms is bad. They do not appear to recognise the skills of the family who would provide the cares. They do not seem to see the person as a person who can be involved even in their last few weeks or days of their life.

Death is not a medical procedure

Death is a natural process and despite incredible advances in medicine and a doubling of life span has not been beaten. Every person alive today will die and they should have at least an input into this experience. Medicalising death means that the last 2 weeks of a person’s life may be their most expensive. Hospice care or dying at home would be cheaper and avoid many of the expensive medical procedures.

I do not support assisted dying because I believe that it would be an excuse not to offer good quality care. The dying person cannot unilaterally decide how they are going to die. People cannot unilaterally decide anything in life so it would be false to suggest that dying should be different. Equally wrong is doctors taking over the decisions about death and asking lawyers to back them up.

Many people would trust doctors to do the best for them if they did not read about cases where autonomy was disregarded. There are dying people who refuse to go to hospital because they have experienced poor treatments. Trust in medicine is falling rather than increasing and support for assisted dying is increasing. This polarisation is not good for the dying patient.

Rejecting futile treatments is rational

Cancer treatment is often phrased as ‘giving a person a chance’ even when the benefits are minimal. When an oncologist states to a newspaper that they would not undergo a type of cancer treatment this seems surprising. The problem is that although there are some extraordinarily effective cancer treatments most late-stage treatments do not really work.

A less than 20% chance of response after 6 courses of treatment is typical for advanced cancer. The chance of harm is 100%, the benefit is another 6 months life in a few people. Scientists say that this is a reasonable response but most people would be unimpressed. There is evidence that doctors do not make clear the risks and benefits of a treatment in this situation.

Relatives and the dying person need an opportunity to face death together and this is difficult if undergoing treatment. The physical demands of the treatment and the expectation of benefit mean that hope overcomes realism. Cancer is not the only disease where treatment can be futile but provides an example of the choices.

People should be allowed to suffer

There is only one treatment that has a 100% effectiveness at preventing all suffering. People may therefore need to be able to choose to suffer more than they could if they made different choices. The decision to face suffering is not irrational and may be the best option available. This may be taking less morphine to stay awake or leaving a hospital.

Doctors in hospital using legal restraints appear to be saying that they know better than the person what is good for them. Apart from the arrogance that this perspective indicates few doctors appear to know the real person. These decisions can be made against the will of the person and their family, based upon a short chat.

Dying is a special situation, it represents the last chance that the person has to make choices. It is likely that they will make mistakes but for instance leaving hospital is easily reversible. If the suffering is too intense the person can reverse their decision which cannot be said for some other choices that are made. The ‘death pathways’ are valuable but can be misused in hospitals if overzealous treatment of symptoms leads to loss of autonomy.

Conclusions

Dying in hospital has been an extraordinarily effective intervention for reducing bad deaths. Often the skills of doctors and nurses allow the dying process to be controlled. Patients who would have died in a chaotic and undignified way are allowed the benefit of a good death. For instance, severe trauma has been transformed by hospital care and few patients would choose any other location to die.

The balance to hospital deaths has tipped too far, patient’s needs are not always listened to and dying can become a medical intervention. The increasing use of courts and other legal processes to restrict the liberty of the dying patients is causing harm. There is an increasing loss of trust that the hospital will release the person when they should.

It does not really matter whether this is in 0.1%, 1% or 10% of deaths the damage is being done. Each time a case is reported more people will stop trusting science and look for other solutions. The assisted dying argument is part of the polarisation process. Unless the doctors respect the patient’s right to decline medicalisation, refuse futile treatments and to suffer if they choose then stronger voices will argue against the current systems.

Doctor Mark Burgin, BM BCh (oxon) MRCGP is a Disability Analyst and is on the General Practitioner Specialist Register.

He writes reports considering the ethics of medical care and how to balance patient rights against other issues.

Dr. Burgin can be contacted on This email address is being protected from spambots. You need JavaScript enabled to view it. and 0845 331 3304 websites drmarkburgin.co.uk and gecko-alligator-babx.squarespace.com

This is part of a series of articles by Dr. Mark Burgin. The opinions expressed in this article are the author's own, not those of Law Brief Publishing Ltd, and are not necessarily commensurate with general legal or medico-legal expert consensus of opinion and/or literature. Any medical content is not exhaustive but at a level for the non-medical reader to understand.

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