Above the Ladies hand dryer in Dundrum Town Centre last week was a quote that caught my eye; it read: “Life is not about how many breaths you take, but how often life takes your breath away.” It is typical of the pseudo-profound statements that appear everywhere nowadays, from greeting cards to posts on Facebook. Generally I don’t give them much thought. However, within a couple of days I heard Chris Eubanks (the boxer) utter a similar phrase on radio: “Life’s journey is not about arriving to the grave in a well preserved body, but about sliding in sideways saying, ‘gee, what a ride’.” That one made me smile.
It is hard to disagree with such sentiments. I imagine most of us, when talking in the abstract, think we should all live life to the full, and if that means we head off this mortal coil a bit sooner, then so be it. But how do we react in reality when a loved one who has had a good long life becomes ill? Do we rush them to the hospital expecting, if not explicitly begging, for everything to be done to save them? It is hard not to. Human instinct is to “do something” to somehow “fix it”. This is the 21st century after all, and our expectations of medicine are infinite.
Three months ago my dear old Dad contracted pneumonia. He had just had his 89th birthday. For the past few years he had been paralysed due to a spinal problem. He had partial movement in his left arm, but otherwise had no control over his body. Nevertheless, his mind and wit were as sharp as ever. He was well cared for in a nearby nursing home and I visited him most days. We did the crossword and we chatted about current events and rugby – he loved rugby, especially if Ireland or Leinster were doing well. Michael didn’t like having to be spoon-fed, though he rarely said so. He was frustrated that he couldn’t read a newspaper or a book because he couldn’t hold it, or turn a page, or sometimes because his eyesight couldn’t quite focus, even with his glasses. He was aggravated that he couldn’t change the TV channel if the programme I had set for him turned out not to be so good. I told him a million times to use the call bell and ask the staff, but sure …. “I don’t like to bother them”! He had his Black Bush whiskey which he was able to manage via a non-spill beaker and straw. He was generally well in himself and invariably in good form. Occasionally his urinary catheter would get blocked and we would have a trip to the Mater A&E to get a new one (it could no longer go in the normal route and had to go in through an opening in his abdomen). Michael’s life was very limited but he always had a smile.
When I had a conversation with him about what I should do if he “took a turn”, he told me not to send him to the hospital, because “this is no life”. That was in 2010. So in October 2015 when he got pneumonia, we had the chat again. It was harder this time, because it was no longer hypothetical. I explained that he could be treated with oral antibiotics in the nursing home or we could go to hospital where they would give IV antibiotics. The oral antibiotics might not work, I told him. He nodded. He said he wanted to stay in the nursing home. We both knew what that meant. It was heart-breaking. The next few weeks were difficult. It was much harder than I imagined to do nothing; to let him go. I had to keep reminding myself that I couldn’t ask him to stay for me; nor to put up with the limitations his failing body had placed on him, for one minute more than he had to. It isn’t what I wanted that mattered, nor anyone else, but what Michael wanted. He died on November 10th. He had a good death; maybe not the easiest, but he had every possible pain relief and I was with him. He was conscious up to the day before he died and he was able to whisper to us what he wanted. A nursing friend of mine reminded me that we used to call pneumonia “the old man’s friend” because it took them away from possibly worse illnesses or disabilities. We have forgotten such sayings now, but I would maintain they are still true.
Death is inevitable for all of us. It will come. The only option is to try to control, in some way, how we die. On December 30th 2015, Michael D. Higgins signed the Assisted Decision-Making (Capacity) Act (2015) into law. One of its provisions is providing a legal framework for Advance Healthcare Directives (AHDs). Sometimes referred to as “living wills”, AHDs allow people to specify the extent of medical treatment or intervention they wish to receive, or more importantly, to decline, in the event they become unconscious or unable to communicate in the future. Everyone has the right to decline any treatment if they so wish. In most situations we can readily do that ourselves. AHDs provide for scenarios where we may not be conscious or able to communicate those wishes. Effectively, they provide a means for people to state in advance what they would wish for, in terms of medical treatment, at the end of their life.
I contend that everyone should consider completing an AHD and critically, to have that conversation with family about what you might want, or not want, if you become suddenly seriously ill. The website www.thinkahead.ie has detailed information on AHDs, including template forms. Alternatively people can call 01 6730040 to request a form.
Anna McCabe is a mature student in Health & Society at DCU. Her final year Health Action Project entitled “Advance Advice”is to help raise public awareness regarding AHDs. Her Facebook page has additional information on this topic: www.facebook.com/advanceadvice