An article by Lorcán Mac Mathúna on dying and care on a discusion with Dr. Des O'Neill, consultant geriatrician, Tallaght Hospital

Death

Death is when spontaneous heart and lung function is no longer possible.

Brain stem death is when the unconscious reflexes which maintain respiratory functions and allow for higher functions are no longer functioning. This state as a definition of the irrecoverable end of life is a bit more challenging than previous understandings of death because with technological advances we can maintain people in that state. And there is no doubt there would be some concerns over whether we are giving people enough time to recover though it is most unlikely that you would recover from that state.

CP_E_DiscussingIssues

You want to be certain that diognosis of brain stem death is done by at least two senior clinicians (i.e. consultants) and you need to be certain that there aren’t reversible casues. There is a protocall to ensure the patient is not in a coma due to their tyro gland being inactive; that their sugars are normal; and then you have a process whereby you take people of the ventilator for trial periods and look for signs of distress or recovery. There is potential imperfections in the protocall, as outlined by the (US) presidents commission on bioethics, which are largely concerning the issue of what is driving us to decide people are dead: is there unconscious rationing going on in the background?

Keeping people alive on highly invasive forms of therapy is very challenging. It is very different from your Christopher Reeve situation, what we are talking about here is intensive invasiory ventilatory support. There is always going to be a grey are here and pushing of frontiers. Chronic ventilation without the likelihood of higher brain function; of spontaneous breathing, raises serious issues of whether people would have asked for this.

 

Cost (in human terms) Versus Benefit

There is a point, measuring: human cost versus benefit, and cognisant of the fact that we are all eventually going to die and that this is natural; what is an ordinary and extraordinary measure, where it is possible to withdraw life support without it being labelled euthanasia.

The other thing is we are not omniscient, we don’t know what will happen once we withdraw care life support.One of the most famous treatment withdrawal cases was Karen Quinlan who lived for ten years after they turned off life support. It was assumed that withdrawing the treatment would hasten her death. There are issues around an adequate care matrix: where you are sure that anything remedial has been treated; where due consideration is given to the patient and their family’s culture in terms of what they consider ordinary/extraordinary intervention; as well as an as carefully as can be measured cost benefit analysis, where cost is measured in human not economic terms.

The other thing to bear in mind is consent! This is referring to people who have full capacity, and who do not wish to have specific life sustaining treatments such as for example, chaemotherapy or a ventilator.

We are talking of people who are conscious at the time not the expressed wish of an advanced directive. The fault with advanced directives and living wills is that they feed into age and disability prejudices. An advanced care preference is perhaps a better template for containing a guide to the future treatment wishes of a competent person. An advanced care directive, while giving the allusion of givig control to the patient, does not hold nearly as much value as contemporaneous consent. Many people are very scared of a perceived disability but once they get it they tend to be more sanguine about it. They change their mindset. They grow and adjust to their changed circumstances.

 

Life support

‘Withdrawing life support’ is probably not a helpful phrase anymore. People should be more specific in what they mean. We should talk about withdrawing: artificial ventilation, invasive artificial ventilation, pacemaker support, or artificial tube feeding. Just as we saw in the Karen Quinlan case, it proved not to be life support as she continued to breath. So the phrase ‘life support’ is unhelpful in this context and people should be a lot more specific.

 

Ordinary extraordinary support

Whether support is ‘extraordinary’ or ordinary depends on the condition and this is where there needs to be a certain amount of professional discretion. What is ordinary for someone who comes in to an emergency ward from a car crash, who is otherwise fit and healthy, a high level of intensity, is not necessarily deemed helpful for someone who is at the end stages of a progressive neurological disease. So for example, you wouldn’t be doing a procedure like a transplant to help the latter. So there is not a set standard, it is a highly individualised process.

To a certain extent the accepted duty of care standard is normed to a civilisation, and there are are always those who would seek to up the norm. For example we have breast cancer screening up to 65 whereas some would like to see that age barrier removed.

 

Minimmaly conscious state – an ethics question

There is huge literature on the area of tube feeding and what some people call a persistent vegetative state or a minimally conscious state (MCS). Tube feeding and whether it is ordinary, extraordinary, or artificial, seems to be the ethical question that occupies most people about this illness but perhaps a bigger concern is that people discussing the illness seem blind to the fact that we don’t actually know what the experience of people in a minimally conscious state is, and they are automatically assuming that it is bad. We have to be agnostic about what the condition of people in this state is. They might be happy, they might be sad, we don’t know, but the assumption that it is a negative condition is probably first and foremost the biggest problem. The issue at present is framed as ‘is this a bad way to be?’

While all illnesses are undesirable per se, we have to deal with the issue of distress here. What is dealt with badly when we focus on the issue of the tube is the distress of the relatives. The relatives are distressed and they say “isn’t this a shocking way to be,” but in fact they are not that person; and that person might say “well actually it’s not that shocking.”

Doctors have a role to play in standing up for the patient. In acting to reconcile relatives who are distressed so that there is a common understanding amongst all the people connected with the patient; and in justifying the cost of treatment. It costs no more to care for a person in a MCS than it does to keep a prisoner in jail, and it is always a small number of people we are talking about. Also as technology comes along we have a bit more sense that we might pick up more signals than we thought were there from people like this and that we might also find cures. But again the most important thing is that we are agnostic as to whether this experience is a good or bad one.

The most important thing to keep conscious of is the pastoral, supportive care for the families. Very often you find that in cases where the families push for the removal of tubefeeding, they are not satisfied with the degree of care, the degree of communication, and the degree of attention to their stress.

 

Labelling

The labelling of the withdrawal of extraordinary measures as euthanasia is not helpful its a deliberate blurring of the boundaries.

 

Feeding

The medical council quite sensibly say that food and water are basic necessities where reasonable and practicable. As we understand more, for example about advanced dementia, we understand that giving people tube feeding may actually shorten their lives in some cases. The decision of whether it is reasonable and practicable should be made by clinical experts and should be made in context of a consensual decision with relatives. It’s allways going to be normed to societal norms, but thats a pact that has to be defended in a way that is humane and understands the clinical condition.

 

Euthanasia

Any gesture or act whose primary aim is to shorten life, and which is not related to any therapeutic intent. Euthanasia is the deliberate ending of a life rather than the withdrawal of a treatment that is considered, at that stage, to be extraordinary. Intent, a key factor in euthanasia, is an established legal principle.

The acid test is: If we turn off the respirator and the patient doesn’t stop breathing do we give them something to stop them breathing or do we deal with the situation here and continue to treat them. Once we stop the treatment and find that they didn’t need it will we continue giving them usual treatments.

 

Sedation

In terms of appropriate palliative care you don’t get oversedation. The intentention is allways symptom control not sedation itself as a form of comatising those who are actively dieing.

 

Providing the alternative

There has tobe a two-pronged approach to this issue. It is not enough to say euthanasia is not good enough, there is an imperative to provide adequate and appropriate care and support for these people. A fairly comprehensive view is one that recognises the wider people affected by the illness without ever loosing sight that the patient is the priority and that the agenda of the partient and relatives may not be the same, and that much of the work of doctors and health care workers is to reconcile them when possible so that there is a common understanding