Nothing has changed.
Well, no, that’s not quite true; everything has changed but some principles and practices have not.
I have been writing about DNACPR and Advance Care Plans (ACP) for years.
If you don’t believe me, look here.
So, as I say, this isn’t different.
Covid is new and it has changed our focus, yet, it is merely another disease and if you look in the textbooks of medicine, there are already many diseases.
I suppose what I want is to not dignify it with importance; I don’t want it to feel special, I want to pay it my dis-respect, like the way we aspire to avoid elevating mass murderers or other criminals to positions of celebrity.
Seeing them as something out of the ordinary, putting them on a pedestal creates awe (and fear).
No, fuck you Covid; I can’t wait until you are back in your box.
Well, if nothing (but everything) has changed, what is the big deal about DNACPR and ACP; what is new?
From my perspective it is the focus.
Over the past fortnight I have been conducting some very difficult conversations, mostly with family members in relation to their, usually, mums or dads who have significant dementia who are living in care homes.
In the past, if a person who has advanced dementia (and, please note, I am emphasising advanced here, not those many who are out and about (writing books – Wendy Mitchell), living well with the disease) were admitted to hospital, or experience ‘hospitalisation’ – the process of being a regular person and changing into a hospital in-patient was more often than not a high-risk situation.
Sure, many people out in the community who have dementia and say, developed pneumonia or sepsis and consequently were transferred to hospital did not have a bad outcome; many recovered.
For many, the process of being in hospital and the associated health incident would lead to decline from which the individual would not recover; we have a reasonable model for this in healthcare called ‘frailty’ – for more see here; one day I will write about it in more detail.
Being sick enough to be admitted to hospital is not good; the illness itself is bad and the process of moving to hospital, the treatments, the uncertainty, the investigations and fear are all also very difficult.
You might call it a necessary evil.
Although, as with all such things, you need to consider the costs and benefits.
Is the cost of hospitalisation – a decline in mental and physical wellbeing, risk of hospital acquired infection or harm (falls) and the disorientation and fear of being moved around different wards, meeting multiple doctors, nurses, therapists and others (and now all wearing facemasks, gloves, gowns and goggles) worth it?
Yes, in some situations the benefits outweigh the risks.
An older person falling and breaking their hip at home or in a care home will almost certainly die unless an operation is undertaken; some people die even after the operation (estimated as one in three) – we need therefore to determine whether the outcome will be worse than the treatment.
You can’t always predict who the one in three will be although sometimes it is possible. Equally, you can probably estimate for whom hospital transfer and treatment will be terrible, painful and frightening.
Returning to the original ideal that none of this is new is, I feel reasonable.
‘Your mum will not benefit from attending the hospital in an emergency’ is not a new concept or conversation; it is one I and my colleagues have been having for years. People like me, that is, geriatricians, specialists in the care of older people, have been focusing on this for years; approximately six months ago I stood-up in front of all the GPs in Rotherham, with my colleague Fiona (a palliative care consultant) and tried to explain the importance of DNACPR and ACP.
Everyone listened; few changed their practice.
Now, everyone is changing their practice.
I know this week there was supposedly a group post to a GP surgery’s patients with DNACPRs.
I can’t get my head around the decision-making processes.
We, that is everyone working in care is experiencing unbelievable pressure which is likely to result in some people behaving out of character or making wrong or bad choices.
That is my interpretation.
I feel pity for the team involved.
For, you see, completing a DNACPR or an ACP for doctors (and now many nurses) is an act of compassion.
It is not a requirement of the role; it is not a statutory or regulatory necessity.
People are doing this because they know that for many, transfer to hospital will be painful, frightening and not alter the outcome – the person will either recover or deteriorate regardless of their movement through ambulance, A&E and hospitals wards.
For some, the process of moving to hospital will actually hasten their decline or death.
It is an act of compassion – that is, from the Latin, suffering-with that they need not undertake; they could step-back, leave the conversations, allow ambulances to do their thing – rush as fast as they can to the home or care home and sweep someone off to the hospital.
It is an act of compassion for the patients as many patients do not want this; they would prefer to remain at home, even if the likely outcome is that they will die – remember, the alternative in many instances is death in an anonymous hospital ward or side-room.
It is an act of compassion for the paramedics who equally know they are doing the wrong thing by taking the person to hospital who foresee will not benefit from the intervention (experienced clinical staff can usually within minutes accurately predict a clinical outcome, see the future, understand the likely course and experience of a person; this is a combination of skills, learning and intuition.)
In these instances, the easiest thing to do, the thing that would save the doctor, nurse or paramedic the least emotional upheaval (at least at that moment in time) would be to get on with things and let others sort it out.
Letting others sort it out has been the default for many years;
When a doctor meets a patient who is dying, perhaps not imminently, but in their last year or months of life, it is easier to pass the emotional labour of the conversation with the patient or their relatives to someone else.
Covid has led to a situation where this luxury does not exist.
The situation in hospitals is becoming unmanageable; we – that is society, is running out of ventilators. Many hospitals ran out of protective equipment last week – facemasks, visors and alcohol-gel.
In the world of disproportionate plenty, excess, we can’t find these important items.
What was once a ‘dementia friendly hospital’ it going to flip into a sterile clinical environment;
Painfully, my old ward, Mallard, in Doncaster shut last week. It was moved, relocated and turned into a general unit.
The love, the care, the fun that existed on that ward will I am certain continue, but in an attenuated way. Diminished by the pressure, the uncertainty.
Everyone and everything is changing.
For some this is stepping up and doing what should have been done; starting those difficult conversations – which now are even more challenging as there is both pressure of time and situation; we can’t meet our patients or their families face to face – we have lost the facial expression and body language that tells us when to slow down, when to leave the conversation for another day.
If your doctor or nurse discusses resuscitation with you or your relative, please be patient with them. These are emotionally exhausting experiences.
What has changed?
OK, I will admit things have changed; the facemasks, the language, the urgency; what has remained constant, and for all of us this will remain so, is the care, the compassion, the sensitivity and emotional labour involved in supporting others, providing succour and guidance to our patients and their families and loved-ones.
We are all in this together.
Together we can get through it.