2014 · 2014 International Symposium - Brussels · Clinical · Healthcare · Insights

Copper Room with a View – End of Life Discussions

20141020_MND Kings College_125Posted on behalf of George Aynsley (Liverpool, UK):

In my final post from the symposium, I report on the End of Life Discussion session:

This was a fascinating session as it brought 3 superb international speakers into the forum. Given the varying legality of euthanasia across countries, a discussion highlighting differing approaches was elucidating. I will first clarify some terms involved in end of life care:

  • Euthanasia – killing of patient at request of patient
  • Physician assisted suicide – physician provides lethal dose of medication
  • Alleviation of pain – provision of medication in such a dose that may reduce life
  • Decision not to treat – removal of life-sustaining treatment eg Ventilation

Dr Van Den Berg, from the Netherlands, discussed that the legal status of euthanasia may affect how physicians think about it. After issuing a survey to physicians involved in the end of life care of ALS patients, there was an 84% response rate from Dutch physicians compared with 64% in England. This shows that there is more of a discussion in Holland where euthanasia has been legal since 2002.

Dr Finlay, in relation to this, talked of how the closer one gets professionally to ALS end of life decisions the less likely one is to agree morally. In the UK, where euthanasia is illegal, 77% GPs opposed changing the law as did 80% of neurologists and 90% of palliative care doctors. Perhaps the more death is a part of your day to day the more this affects your moral disposition on the ending of life. Or the ethics of the physicians going into palliative care may initially be geared against it.

Dr Finlay raises many valid points in regard to assisted dying that were replicated by Dr Van Den Berg and Dr Borasio. Care should be proactive – alleviating symptoms, improving quality of life – if there becomes a probability of death then there should be a change in care so that interventions which may be damaging psychologically and/or physically and no longer achieving therapeutic control do not continue. Responsibility of which rests with the doctors.

How can we be sure that someone has the capacity to make a valid decision given that 30% ALS patients have mild cognitive impairment. Presence of depression may also hamper our decision as to whether a patient can make a decision realating to their want of death. During the discussion, Dr Finlay explained that capacity is not one thing. A person may have the ability to choose a single decision e.g. which treatment they want but  they may not have the resources to make a more complex decision such as a decision to end life.

There may also be a fluctuating desire to die as patients’ mood, desires, family relationships change. To illustrate this Dr Finlay tells us to ask people who wish to die, ‘what is so terrible about today?’ and ‘what can I do to improve your day?’

Dr Borasio’s talk was fascinating with respect to what offering choice to patients has upon their decisions to go through their end of life treatment. Only physician assisted suicide is allowed in Switzerland. Of the people that decided to receive lethal medication, two thirds did not take it. Instead it was kept at home as a safety net for if things get worse. It’s as if the availability of lethal medication is a preventative to suicide and giving people this control affects their disposition with ending their own life.

Everyone agreed to the risks posed by physicians in affecting patients’ decisions on their end of life.  And that ‘water-tight’ regulation was required. Dr Van Den Berg was adamant that we should be continually worried about what we can and cannot do.

Amidst the debate of legality, ethics and whether active euthanasia is dangerous, an ALS patient at the front of room (who has considered ending his life) tells us that his concerns are with ‘how’ one dies – what is the method? Is there an optimal option? Is there pain? – these matters which are prominent and very real to the patient going through this process are immensely important. This is our opportunity to allay fears and show compassion for people in front of us which can be quite removed from the political grandstand on which assisted dying is sitting.