By Daniel Sokol
Medical ethicist, Imperial College London
The debate in the Lords over whether doctors should be allowed to help some terminally-ill people to die has highlighted the kind of moral dilemmas faced by the medical profession. Daniel Sokol, a medical ethicist at Imperial College London, sets out some examples, and how patients can help.
The art of medicine is riddled with uncertainty. Often, we cannot tell precisely what is wrong with a patient. We cannot be sure a particular drug will resolve the problem, or how a patient will react to it.
We cannot predict with much accuracy how some diseases will develop. Medical evidence is based on large numbers yet, in a consultation, doctors are faced with a population of one. Behind the assured fašade of Western medicine, with its controlled trials and confident manner, lies a sizeable core of uncertainty.
Each patient requires a decision that is not only medically appropriate but also dependent on his or her values and personality.
There are, however, ways to avoid or reduce the most common ethical problems in medicine. And often it is the patient who can supply the solution.
HE WANTS ME TO END HIS LIFE
Case Study: Mr Preston, a 52-year-old smoker, is in the terminal phases of lung and bone cancer. Despite the best palliative care and the doctor's repeated attempts to dissuade him from taking his own life, he says that the pain is unbearable and that life simply isn't worth living in this state. He asks the doctor to prescribe a fatal dose of barbiturate (a sedative) so he can kill himself and die with dignity.
Doctor's Dilemma: A doctor's role is not always to save life, but at times to alleviate suffering. In this case, the doctor believes that his patient's physical and psychological pain is so intense that it may be in his best interests to take the sedative. However, although prescribing the drug is consistent with respecting the patient's autonomy, it may clash with other ethical principles and, at least for now, is illegal in the United Kingdom. Assuming the doctor believes that in some exceptional cases assisted suicide may be ethically desirable, does Mr Preston's case fit into this category and, if so, should the doctor break the law to fulfil his ethical obligation?
Patient's Solution: Although the issue of doctor-assisted suicide is being debated in the House of Lords, currently your doctor cannot prescribe drugs to intentionally shorten your life or even advise you on how best to kill yourself. It is unreasonable to ask your doctor to break the law, thereby risking his career and 14 years in prison. Some patients have travelled to countries where doctor-assisted suicide is legal to obtain the required medication. Others have sought refuge in the Suicide Act of 1961 which decriminalised suicide in England and Wales. Others have written an advance directive expressing their wish not to receive any life-sustaining treatment. There is no easy solution and the Lords is faced with a moral dilemma, where each course of action contains a morally regrettable element.
HOW MUCH SHOULD I TELL HER?
Case study: Mrs Jones is a fragile, elderly patient diagnosed with an aggressive form of bowel cancer. The doctor in charge does not expect her to live more than a few weeks, but is worried that disclosing this information would distress her greatly and perhaps even shorten her life. What should the doctor do?
Doctor's Dilemma: Doctors must decide how to explain a diagnosis or prognosis to patients they may never have met before. In normal circumstances, doctors assume that patients want to be told details about their condition. Allowing patients to make informed decisions about their health is a key part of respecting their autonomy. Occasionally, however, sharing bad news can clash with other moral concerns, such as maintaining hope or, in the case of Mrs Jones, avoiding harm. So, tell the grim truth or keep her in the dark?
Patient's Solution: Doctors are not mind readers. If you want to control the level of information your doctor offers you, be direct (but polite!). Ask questions, however daft they may appear. Some might think it rude or inappropriate to query the consultant, or worry about appearing foolish. Yet the success of a consultation relies on the quality of communication. Some doctors, for example, interpret a failure to ask questions about a prognosis as a desire not to know about it. If, however, you would rather not know, or wish to know only the bare minimum about a prognosis or any other issue, indicate this to your doctor as early as possible, preferably when you first arrive at the hospital. They'll be grateful for it. This advice also applies when you are consenting to a procedure.
Ask the doctor if you don't understand
SHOULD I TELL THE RELATIVES?
Case Study: same as above.
Doctor's Dilemma: Since the doctor does not know whether Mrs Jones would want to be told the truth, he could ask the next of kin - her husband - for advice. This would reduce the guesswork. Consulting with close relatives can provide a window into the mind of the patient. However, with a few exceptions designed to protect the health of the general public, doctors cannot disclose a patient's medical information to anyone who is not directly involved in the medical care of the patient. Without explicit permission, the doctor cannot ask the opinion of Mrs Jones' husband.
Patient's Solution: It is a good idea to tell the nurse or doctor who, if anyone, you would like to be informed of your condition. Furthermore, you can appoint a trusted person who the doctor can approach if he is unsure of a decision or when, due to mental confusion or unconsciousness, you are unable to make decisions yourself. That person will guide the doctor into making decisions that match your values and preferences. You may appoint more than one person, although it is wise to specify one principal decision-maker in case of disagreement.
SHOULD I RESUSCITATE?
Case Study: Mr Smith is a 70-year-old smoker with ischaemic heart disease and heart failure. He is admitted to hospital with a chest infection. Unexpectedly, he goes into cardiac arrest. The medical team think it best not to resuscitate but the relatives insist that everything be done.
Doctor's Dilemma: The doctors believe that resuscitating Mr Smith is not in his best interests, based on his slim chances of survival and, in the event he survives, on the likelihood of severe brain damage. The relatives, however, are willing to gamble. They disagree over the futility of resuscitation, pointing out that Mr Smith has always been a "fighter" and that even a 1% chance of survival is better than no chance at all.
As a competent patient, you can refuse any treatment, even if it means you will die as a result
Patient's Solution: As a competent patient, you can refuse any treatment, even if it means you will die as a result. An advance directive is a statement indicating whether you want to be treated in certain circumstances. It allows you to have a degree of control over your care in the future, when you may no longer be competent. This usually provides patients with some peace of mind and makes the doctor's job much easier. An advance directive from Mr Smith declaring "no cardio-pulmonary resuscitation" in case of cardiac arrest would have resolved the doctors' moral dilemma. To be legally binding, an advance directive must fulfil certain criteria, so ask your GP for details.
CAN I REMOVE ORGANS WITHOUT CONSENT?
Case Study: Mr Strauss has recently died in hospital from injuries sustained in a car crash. Nonetheless, several of his organs could be used for transplantation. He has not left any indication of what to do with his organs and his wife, greatly distressed, refuses to be involved in the matter.
Doctor's Dilemma: Many people are willing to donate their organs to help save the lives of others. Others, for a variety of reasons, would rather be buried or cremated with all their organs still in them. Without an indication of the patient's preference, how can the doctor decide in which category the patient falls?
Patient's Solution: In the UK, doctors can legally remove organs from a dead body for transplantation as long as no relative objects and the patient had not previously objected. If the patient had not given any preferences and no relative objects, organs can also be extracted. So, in the case of Mr Strauss, the hospital would be legally permitted to extract his organs since he did not previously express an opinion on this issue and his distressed wife is not objecting. Although disagreeable, it is worth thinking about your desire to donate organs for transplantation, research or teaching. You can then write an advance acceptance or refusal.
CAN I EXTRACT SPERM FROM A DEAD PATIENT?
Case Study: Mr Thomas, a 28-year-old man, is run over by a truck and dies soon after. His wife, also 28, asks the doctors to extract her dead husband's sperm, saying that they have always wanted to have children. For the last year, they have been receiving infertility treatment.
Doctor's Dilemma: Although the couple have been trying for a child, the doctor cannot know if Mr Thomas would have agreed to have his sperm extracted after his death. Perhaps he would not have approved of his wife being a single mother, or his child being fatherless. His wife, however, is convinced that he would have consented to this procedure.
Patient's Solution: Although rare, doctors in the US and the UK have been faced with dozens of cases similar to this one. In the UK, doctors cannot lawfully extract sperm from a dead man without prior, written consent. If you want to leave a genetic memento after your death, you must therefore document your consent in writing.
Add your comments to this story using the form below:
I am a first year medical student and I think that this article is extremely well written and interesting. As part of the course we have to learn about medical ethics and law, with many group debates involving cases much like these. Doctors have a duty to provide care for their patients, and to act in the patients best interests. This can provide some very harrowing moral dilemmas, and I think its high time that the government and the GMC came up with more comprehensive guides on the issues and ethics surrounding the 'right to die'.
Caroline Prentice, United Kingdom
I remember well my father's case in 1978.Then doctors didn't tell you that your illness was terminal. He died three weeks after I found out. If only he, and I had known we could have spent our last days together differently. I do hope that should I have a Terminal illness that my GP or consultant will tell me, so that I have some "Control" over my last days.
Howard Bartlett, Wales
To Neville Collins. Doctors don't make these kind of decisions and find themselves in these situations out of pretension and ego, they do it because they have to be done. We can't leave everything to some cosmic power, we have to follow courses of action we believe to be right. Believe me, I wish I could avoid these decisions throughout my career and just live in the land of milk and honey but the reality of it is that I'll probably deal with them every day.
A Medstudent, UK
I feel that it is very unfair that tough decisions, such as those outlined above, are left to doctors, and even to relatives.
"Living Wills" should be compulsory, and made when the person is in a fit state to make such decisions.
Ian Fox, Ireland
When my mother was diagnosed as being terminally ill she was not informed of her prognosis, neither were the rest of my family. The consultant gave her treatment that made her feel awful, despite the fact that this was not going to improve her condition. I asked another doctor what her prognosis was (based on the diagnosis) and he told me. I bore the brunt of caring for her (which I was more than happy to do) whilst she suffered unnecessarily. At the point when my mother was within days of dying, at which point she was distressed, in pain, not to mention terrified, I was not even allowed to speak to her consultant as I had not got written consent. I believe that my mother was given false hope by the consultant and consequently did not receive the best palliative care. This cannot be right.
I don't think that the right to die is just for the terminally ill.
I am in pain day in day out, night in night out. I rarely have relief and as such my standard of life right now is zero.
I am a burden on my family as at times I am in so much pain that I jus cant function as a human being any longer can't think can't move much and this upsets my wife so much.
The doctors can't stop the pain, I would like the right to die right now. I don't want to be like this for the next 30 or more years.
If I were a dog I would have been put down by now. Why can't I have the same rights?
Malcolm, Morecambe, UK
I am a solicitor and one of my areas of practice is dealing with the Elderly. I am now often asked to draw up Advance Directives ("Living Wills"). This was a really useful and well-written piece, which I shall keep by me for reference, especially as the writer deals with the medical ethics and the law together.
David Jackman, England
Very thought provoking and reaffirms the reason why I made a Living Will at the age of 35
Karen Chesnet, Aberdeen, Scotland
What pretentious rubbish! The doctor is there to provide care, not to take god-like decisions. Who on earth do they think they are ? Vets don't have this sort of problem when they put suffering animals to sleep.
Neville Collins, France (ex- UK)
In the example of whether a doctor should consult a relative I wish my mother's GP had followed the advice outlined. Her GP consulted my brother, who then got in touch with the rest of the family, including me. Since three of us live in different countries so it was going to be obvious something was terribly wrong when we all turned up out of the blue. Since I work in the confidentiality field I was furious that the GP had not thought the issue through - news of impending death spreads like wildfire (we Irish love a good gossip) and contacted the GP directly. To give him his due, he acted quickly and spoke with my mum before one of the relatives, neighbours, friends, etc blabbed. Decisions like these are difficult for doctors to deal with. However, the Department of Health, GMC and BMA have written reams of advice. All that's required is a little reading.
Liam O'Kane, England
Do these very powerful case studies provide a case for the national identity card? Patient desires and wishes could be recorded on the card database, and recalled quickly by the appropriate doctor, ensuring that the patient wishes are known and acted on.
Terry Leese, United Kingdom
I feel sorry that the medical profession face such dilemmas. I believe that doctors do take the decision to hasten death to alleviate suffering and help their patients die; it is just not openly spoken about for fear of prosecution. I am grateful to the hospice doctor who hastened my mother's death in the face of protracted and pointless pain. We should have the courage to treat people as courageously as we treat animals.
"...If you want to leave a genetic memento after your death..."
I have to admit to being an old fashioned sort of doctor. I do not have genetic mementos - I have children.
Dr JF Harrison, Warwick, UK
A potential problem facing practitioners, particularly in Emergency care is that they would not have immediate access to a patient's advance directives. One contributor suggests a national database, for example, the planned identity card system. Without getting into a debate over ID cards, there are a number of solutions. One already exists in the form of the National Organ Donor Register. Secondly, some countries, for example Portugal, are introducing national health smart cards, so in the case the emergency your medical history is on a smart card. These could carry information regarding specific advance directives. An obvious problem with this is the security surrounding such directives. Not only in terms of data protection and access, but also the nightmare scenario of a third party tampering with someone's wishes.
Michael Bloomfield, United Kingdom
Am I naive, out of touch or have people suddenly got principles?
I have for long been under the impression that with the exchange of a few ambiguous phrases with the closest relatives, doctors have long eased the 'passing' of terminally ill patients close to death.
Robert, Luxembourg (ex UK)
Mr Collins appears to have failed to understand the point of this article. If he bothered to read the examples above carefully, he would see that each situation is demanding a decision and a course of action. In no case does the doctor take it upon themselves to make other people's decisions for them- why create more hard work for yourself? There is plenty to do already.
Those decisions as you can see have to provide an appropriate workable plan while considering various ethical, clinical and even legal factors. Often the situations are highly emotionally charged. If this article improves understanding between doctors and patients, so much the better for all of us.
Dr Tim Deegan, UK
While talking to a solicitor a fortnight ago about drawing up a will, I asked about Living Wills. He advised that they were not legally binding, and I might as well save money and just write a letter stating my wishes. And pointed out that it is unlikely medical staff will find it in the event of being hit by a bus. What is the situation here?
I cannot understand how anyone who has experienced someone dying in a slow and painful manner can argue against giving them a real choice, with the potential for help from doctors. In my opinion there are no good arguments against and we are doing our ill and elderly an injustice by not giving them this choice without the moral dilemma of asking a doctor to risk his career or a relative to risk their freedom.
M Christini, UK
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