The Hospital System - from the other side of the consulting desk.
(I came across this blog that I wrote some years ago in pre-COVID times.)
Well, now it was my time to experience the system first hand, as a health care consumer, or rather, the daughter of a health care consumer. Nothing like direct experience to teach us a lesson or insight or two!
My father, aged 92 and previously bright, capable and sprightly, experienced a rapid and unexplained decline in his health. In a matter of a few of weeks, he lost a dramatic amount of weight and developed pronounced lassitude and clouding of his usually alert consciousness. Despite coaching, he could not eat or drink anything more than a bite of toast or sip of water. Clearly he was declining, a situation compounded by his living alone, a widower, with son and daughters scattered geographically and pre-occupied by their own busy lives.
Not an unusual scenario, though unusual for me from the other side of the consulting room. Of course life will provide us with lessons to upgrade our understandings and maybe, particularly, to humble us when it is called for. It is an entirely different experience to organise somebody else’s care with some sense of detachment, to being in the throes of having to personally deal with the day-to-day logistical and emotional reality of caring for a family member.
So, I have some guidelines for new players in the field of negotiating a loved one’s care through the hospital system.
Lesson number one: People are not necessarily caring for themselves as they might be suggesting, and even appearing, to be. It was a harsh reality that, despite appearances and reassurances, my father was not at all caring for himself well. Being a very private, independent man, he had not invited or welcomed any assistance and had actively dismissed any help, such as cleaners, that we had arranged. We suddenly realized that our perception that Dad was doing fine, and indeed was remarkable for his age, was perhaps a little delusional, ‘head in the sand’ or, at least, overly hopeful. It is very easy to overlook the raw situation when our own busy professions and personal lives so distract us.
Though a medical practitioner myself, I resisted being my father’s carer and medical confidant. He was in good hands with his own GP and I very much respect the code of not medically caring for one’s own family members. It is true – one cannot be fully objective when emotionally invested.
It might be surprising to some that, as medical practitioners, though our occupation is that of medically caring for others, we do not necessarily also want to take on that role in our personal lives. Nor should we. We need a break from being ensconced in others’ health challenges and problems and attempting to care for a family member is fraught with the risk of emotional entanglement. Despite boundaries, rules and regulations there can be an awkward, blurry line however.
Lesson number two: When your family member experiences their health crisis expect their GP to be on holidays. He or she might not be, but expect it. I very much support my fellow doctors in taking regular holidays and maintaining a reasonable life/work balance. However, that is not the point of this argument. Just make sure you have a ‘plan B’ up your sleeve.
Lesson number three: If you call the ambulance service to help transport your very non-ambulant father to the hospital, do not speak to the officious individual that I did. Or if you do, lie through your teeth. This individual guarded those ambulances like a Rottweiler and did not exactly exude the milk of human kindness. I am sure that he is the exception that I was unlucky enough to strike on that day. Or, maybe he was just having a bad day. Let’s just say I do not recall ever having spoken to a colder, more antagonistic person. I am fully aware that the ambulance service is overburdened and stretched to the max and that they do indeed have to be very discerning regarding what cases they direct their precious resources to.
An old debilitated man is no match for a car accident or acute myocardial infarction. I do understand that. But there can be a kind, supportive way to give the caller that information. Rather than spending an hour trying to justify to the likes of that particular personnel your need for their services, get a neighbor to help you carry your father to the car and drive him to the emergency department yourself. Oh, and never, never tell them that you are a medical professional yourself as they will expect you to be not emotionally affected by the situation and to have taken the patient’s ‘obs’. In this situation you are strictly a family member.
Lesson number four: When you arrive at Accident and Emergency expect the administration staff to be efficient but not connected to you or your family member in any sort of warm, human way. They have seen it all and most of them became cynical and compassion-weary very early in their careers (I know, I have been there). Do not let the soulnessness of the environment get you down. It is part of a mighty system that long ago lost its heart. Know that despite this people are doing their best, given their jobs and the system as it is.
Lesson number five: Do not let anyone speak to your father as though he is a three-year-old child rather than an intelligent adult who has manoeuvred his way through a multitude of life challenges and experiences and managed to survive ninety-two years on this planet. No mean feat. We little honour that. Expect staff to introduce themselves by name to both your family member and yourself as they waft in and out of your cubicle. It is nice to know who they are and what their role is. It is so easy to overlook normal human politeness and gracious exchange in these sorts of situations. Different when they are in the middle of an urgent medical intervention, I know.
Lesson number six: acknowledge, and be very appreciative of, the one staff member who is the bright light and engages with warmth and genuine care. There will always be one, whether it is a nurse, a doctor, a porter or admin staff. There will always be one and if you are lucky - two. They are gifts from Heaven who seem to be strategically planted into environments that so need their uplifting presence.
Lesson number seven: Take a good book or some work that you can do on your I-pad or laptop. Oh, and some food and water. The patient’s and attendee’s biological and intellectual needs are not necessarily catered for in this stark environment and you might be stuck in that cubicle for hours. And I mean hours. Be ready to duck for cover when, after some hours, you dare to ask how long you have to wait before a doctor assesses your family member. You do not have another life besides being a cubicle sitter from their point of view. And neither you nor your family member has any rights in this environment.
Lesson number eight: I repeat, take some food and water for yourself. Emergency environments manage to have nothing but emergency food – highly processed carbs, fats and salts dispensed in plastic packets from some metal machine. The café (which likely will be closed) is little better.
Lesson number nine: Know that despite this being a very imperfect system, everyone is doing their best and a little tolerance and understanding both ways goes a long way to help endure, and make the best of the situation. Many years prior, and before I had acquired a little life experience and humility, I had been that exhausted and sleep deprived doctor who was probably more sullen and efficient than warm, understanding and engaging. I might not have been so courteous to that elderly, debilitated man who was going to be difficult to place and who I might have decided was a tiresome diversion from A+E’s more dramatic presentations. How a little life experience gives us a different perspective!
Dr Catherine Fyans is a retired medical practitioner and the author of ‘The Wounding of Health Care: From Fragmentation to Integration’