"If your eyes were all you could move, what would you say with them?" This is the cheerful slogan from a recent advertisement by the MND Association in the UK.
My husband, Michael Lee, is a thousand times more than just his eyes. Yes, he is profoundly paralysed with advanced MND, spends most of the day on bipap (assisted breathing), his facial muscles and blink response have now deteriorated and usually his mouth just hangs open in a less than flattering expression, but he is more than what he looks like or what he can move.
I could put up a photo of my husband with a bipap mask on and one eye taped (because he can't close it anymore). But instead, here is a recent photo of him smiling. It is the biggest smile he can manage, he is using all his willpower and muscles and nerves, to produce that smile. How much effort do we put into our smiles? We, who can smile so easily.
The MND Association's campaign in the UK, focuses on fear and on all that might happen to someone receiving an MND diagnosis. How awful to see that ad, if you had just been diagnosed! Surely whilst raising awareness of the condition, it is just as important to be mindful of those who have to come to terms with having it? Michael often says that the MND has been very gentle with him, every six months he had time to adjust to the next loss of function. It's been brutal and relentless, but it's given us time to adjust to each blow. We have been lucky though, some are not given that time.
On November 14th, the NSW Parliament will debate a bill to introduce voluntary euthanasia and amend the NSW Crimes Act, s18(1) under strict criteria. Also this week, in Victoria, similar legislation is being debated and just passed the lower house.
In a recent article on this topic in NSW, a husband was speaking about his wife who has MND and their adult children. He asked anyone opposing the bill to 'look into her eyes', and tell her that she would not be able to end her own life, at a time of her choosing, to avoid the unbearable suffering that MND might bring. The woman talks about her terror of not being able to breathe.
In all this talk about the terrible suffering of MND, I feel that people like my husband, who have successfully managed to create a meaningful life for themselves whilst living with MND, are being forgotten. It is important to know that there are other ways to handle the diagnosis, so people know that they have a choice, if they too are facing the same diagnosis.
Michael has had MND for over 10 years, putting him in the 1 in 10 category of people who survive for that long, as a result the paralysis is profound and we have had many end of life discussions with care providers about quality of life issues and if/when we should "cease treatment" at some point. In amongst all the euthanasia debates, there is not much said about its close cousin, "ceasing treatment", but there needs to be more discussion around this issue as well to ensure that adequate support is provided and patients' rights are protected.
There is no before and after diagnosis with Michael, his life was amazing before MND and it continues to be amazing after MND. After diagnosis... if we must do it that way, he met and married me, found part-time employment which he could do with just his eyes, lived in an old converted hospital (with me) on the Northern beaches, then we moved into our own government funded, accessible house after the hospital was knocked down.
He is the happiest most cheerful person I know, his endless patience with care workers, his ability to endure, his wonderful, nurturing presence, is just incredible. And yet, his life is tough. I am not trying to sugar coat it. We have plenty of bad days. It takes months now to train up new care workers, with good ones hard to find; our day is segmented into blocks of time by his complex care routine; it takes twenty minutes just to get him into our van for an outing and driving is difficult as his position moves with each bump of the road; communication when he is not on the computer is painfully slow, reliant on an intimate knowledge of his care needs and the direction of his gaze; when he is not on bipap, he is unable to make even a sound to warn someone that he might be in trouble, and constant vigilance is necessary to ensure that he does not aspirate.
However, we try not to focus on these things. We focus instead on how incredible it is that he is still working, a few hours a week doing on-line research, which his precious Tobii eye-gaze computer makes possible. Our wonderful government subsidised, fully accessible house has an enormous garden, and our 'miracle' wheelchair van, which we bought for a 1/3 of the usual price with money raised in only 24 hrs, means we can still access all the beach walks nearby. He meditates regularly, has friends and family visit, he loves 'walking' our dog and recently designed a side extension to his hospital bed so I wouldn't fall out of bed when we had a cuddle! After much nagging, he is also working on a short book, sharing what has helped him maintain a positive outlook throughout the MND.
In relation to end of life options, we do have some degree of choice. They are not particularly pleasant ones, I'll give you that, but we do have some control. Michael knows that at any time, he can "come off" bipap, possibly even stop PEG feeds, with some morphine to ease the transition. Here the euthanasia debate has a valid point, in that there is no guarantee it would be peaceful but usually it is. He could also have chosen not to have had a PEG inserted, when he was a few months from death, six years ago. Again, that would have been a very unpleasant way to go, but the point is that if you solely want to avoid prolonged suffering, there are choices.
Secondly, knowing that you have the option of ending your life, is not a simple matter of just picking a date, there is an awful, irrevocable finality to it, which conflicts with the natural fight for survival inherent within all of us. We have discussed it a few times, when one of us (usually me) is totally worn out, but we always baulk at the clinical finality of it, at the sense of giving up. And therein lies the problem. The only time, Michael really considers giving up, is when he sees I am not coping. We both know that if I can no longer care for him, then his quality of life would plummet; the one on one care people which MND so desperately need, is just not provided anywhere but in the loving home environment.
How much of people wanting the option of euthanasia, is due to the absence of loved ones to care for them, to untrained care workers helping with personal care or to a lack of access to equipment or accessible housing? Agonising pain and unbearable physical suffering often are the focus of the discussions, but there are other factors, which need to be discussed as well, which is why palliative care should be an integral part of this discussion, you cannot separate the two.
People with life limiting illnesses, need access to expert, consistent, personalised care to ensure that ceasing treatment or euthanasia is mainly a 'get out quick option', kept on the shelf for peace of mind, until hopefully natural death or healing comes. For example, one on one care for people with degenerative conditions should be provided in specialist nursing homes, as advocated in recent years by Professor Dominic Rowe. More funds should be provided for genuine respite care for loved ones, with trained care workers or a program which hires live in care workers and protects the needs of both patient and carer.
Finally, there are the care workers themselves. We could not do what we do, without our small team of dedicated care workers. But we go through a gruelling process of finding and then training them. Our small team in January will be reduced to just two, when six weeks annual leave for one, overlaps with another relocating to QLD. When we first heard the news, both of us immediately, simultaneously thought of end of life options. Why is finding care workers so hard, something which has the biggest impact on Michael's quality of life and on mine? This should also factor into the euthanasia discussions.
Care workers are paid a pittance and their rates should be increased, to reflect the valuable work they undertake, which many others would not do. Higher rates would help us to retain staff, improve reliability and ensure consistency of care. We should be able to hire staff permanently through the agencies, not on a casual basis. Government should be freeing up the regulations, so agencies CAN pay care workers more. At the moment, the only way is to hire care workers directly ourselves, and deal with the responsibilities that entails.
Despite all of this, if my husband had taken a pill, to avoid this marathon of an endurance test, how much we both would have missed out on, how less enriched our lives would have been. Let's hope that ceasing treatment and euthanasia, is never something a person chooses to do, because they are worried that their care needs will not be met or because their housing options are limited or because they don't have the right equipment.
Ceasing treatment and euthanasia are important options to help people deal with a mind-numbing diagnosis; just knowing those options are there, can give a person the strength to face another day, but let us ensure first that quality palliative care is being provided, that a person's care needs are being met, that their loved ones are being supported, so that impossible, end of life choices recede into the background and are no longer the only option, to give a sense of control and to ensure quality of life in those final years.