I am a critical care nurse, and have been for the last 15 or so years. I’ve seen a lot of needless sufferings in those years, and so much of it comes down to being unprepared. We don’t like to talk about death – so many of us feel that talking about taboo subjects can somehow invite them into our lives. I don’t know why that is – even my significant other – when I attempt to discuss our growing older and eventual illnesses, states “I don’t want to talk about that.” Well, people, we HAVE to talk about it…now, more than ever.
We’ve all heard of living wills…they are documents that we fill out in the event of a catastrophic illness or injury, that state our wishes should an event like this happen. I do NOT want to be resuscitated, I do NOT want to live my life on a machine, I do NOT want to be fed through tubes, etc. They also allow us to designate a person to make those decisions for us if/when we are able to do so. If there is no document, then those decisions fall to your nearest relative, typically your spouse, child, or parent. Well, sorry that you’re going through an acrimonious divorce, your husband is still legally the decision maker at this point in time. Yes, I know you have children, but your eldest is only 17, so your estranged father has to make these decisions – from California. Yes, I’ve seen ALL of these things happen. I’ve watched a trophy wife try to get her critically ill husband to sign over the rights to his estate while he was sedated and on a ventilator! (Yeah, no – we nurses did NOT allow that to happen!)
Now a word about those machines…it’s a knee jerk reaction for some to say “No – I don’t ever want to be kept alive by machines!” But what many don’t understand is that we can often get you through a critical illness and on the road to recovery using those machines on a temporary basis. Not every illness requiring a ventilator is a ‘forever’ type of illness. Just ask the 25 year old asthmatic who was put on life support the other day – she’ll be fine – she just couldn’t get the job done (breathing) without some support in an acute flare of her asthma. Ask the septic patient – he required life support for an infection that had overwhelmed his body – but should recover with supportive care and strong antibiotics. If you’ve ever had a surgery – you’ve likely been on life support for the procedure as well. We don’t think about that.
Then there’s the other side of the coin – a stage 4 cancer patient, who suddenly stops breathing in the car on the way to his next chemo appointment – an ambulance is called and the patient is resuscitated, and the family wants everything done. He has no living will, so we do as the family wishes. Some of you may be thinking – “that’s right, take care of him, he can beat this yet and he deserves the chance!”; while others may be cringing, thinking, “why would you do that to the poor man – he’s already dying of cancer for cripes sake?”. And honestly, I’ve heard it all…I can remember one woman – from my early years of nursing, who’s elderly, vegetable-like husband, was in the hospital for another bout of pneumonia, and the physician attempted to clarify goals of care with her. Meaning, he’s sick, he’s never going to recover from his old stroke that left him bedbound, unable to move, and fed through tubes – do you want us to treat him aggressively, or make him super comfortable and let him go peacefully? (Nowadays, we call that hospice care.) That woman poked her index finger hard into that doctors chest and said “It’s your JOB to keep him alive for as long as you can!” I will never forget that.
And yet, this isn’t about the judgement of others – we all have different feelings about life and death, and different desires – it’s about knowing what YOU would want and having it in writing – and designating a person to speak for you when you cannot – who will uphold your wishes, as emotionally difficult as it may be.
Hmmm…why’d she make that bold? Well, let me tell ya. You’ve got to be sure your designated decision maker won’t flake out on ya. Two big scenarios I’ve seen…
The first involved a young woman who was in the beginning stages of ALS (Lou Gehrig’s disease). She had told her physician that she did NOT want a tracheostomy and ventilator support when that time came. The doc had it well documented in office notes, etc. But the patient never did any advance directive paperwork, so when it came down to the wire – the patients husband basically told the hospital and her physicians, “Do it, or I’ll sue you”. And it was done. Could the docs office notes have protected him? Perhaps… But in the litigious society we live in now, no one is going to take that chance. I often wondered how their marriage fared after that, or how long she lived, and what quality of life she had.
Another incident occurred more recently. Another advanced stage cancer patient, had a potentially curative surgical procedure, but wasn’t doing well post-operatively. This woman had a living will, and a DNR (do not resuscitate) order. However, DNR does not mean we won’t treat you to get you better – it just means we will not resuscitate you if your heart should stop. She went on the ventilator, and over the course of a few days, wasn’t getting better. The physician wanted to take her back to the OR to see if there was something amiss. The patient, still on the ventilator and moderately sedated, was shaking her head no – no she did not want to go back to the OR – she wanted the tube out and wanted to be comfortable. Because she was receiving sedation, it could be inferred that the medications were not allowing her to think clearly. Her family overruled her and back to surgery she went. She died a few days later.
These situations haunt me…they really do…
I’ve been rambling here, but I guess the moral of the story is – HAVE those discussions with your family and loved ones. KNOW what you would want and be sure that your loved ones do too. Designate someone you TRUST to uphold those decisions in the event that you cant, and REVIEW your paperwork frequently and AMEND it as needed – marriages fail, friendships fade, and families change.
Do you have a living will or a health care power of attorney yet?? Why not??