Advanced Care Planning – Thinking ahead

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This is a post I have been wanting to write for some time but there never really seems to be a cheery opportunity to crowbar the old ‘planning for dying’ conversation into a blog – so I’ve decided to spring it on you unawares, because no matter what your thoughts on dying, it is something that will happen to you at some point (as I wrote that last sentence the sky outside the window turned ashen and it started snowing – I appear to have walked into a Dickens’ novel, excuse me whilst I don my fingerless gloves and shuffle by candlelight to my garret).

Death is a subject that I am comfortable with although this may be related to the fact that most of my dealings with the dead and dying have been professional rather than personal.  I have lost loved ones but these have been elderly relatives who have had the proverbial ‘good innings’ and the feelings of loss have been tempered by a sense that ‘it was the right time’.  Clearly for those who have lost somebody in a traumatic event, a spouse, child or parent or perhaps a friend who was young and in the prime of their life, death is a very different matter: a tragedy, an unacceptable ending, a theft.  For these people, talking about death and preparing for it may be something they wish to avoid and media coverage of these issues maybe distressing.  However, even for those who are uneasy with the topic it is vital that the conversation is heard and that awareness is raised.  At a recent End of Life conference the following statistics came as a surprise:

  • Thirty percent of people in hospital on any given day are in their final year of life.  These people are obviously the inpatients – I wouldn’t want anyone to think that by walking into hospital to deliver a bunch of flowers or taking the snack trolley round the wards you increase your mortality risk.  Neither would I want people to think that the actual process of being admitted to hospital increases your risk – as Jeremy Hunt has shown, misuse of mortality data can have catastrophic consequences (alienation of an entire generation of doctors and widespread panic amongst the public who now believe that being admitted on a Saturday will actually kill them).  The statistic merely illustrates the fact that a large proportion of our inpatients will have died by the end of a year, which in itself is a reflection of the age and frailty of the average hospital admission.
  • One percent of any General Practice list are likely to be in their final year of life:     i.e. one percent of the whole population of the UK if you work on the principle that almost everyone is registered with a doctor.  The vast majority of these people are not identified as being ‘End of Life’ and are therefore not aware of services that may be available to them (increased care, help with finances etc).  They are also unaware of the importance of having timely conversations with family and making their wishes known about their priorities for care as they near the end of life.  The challenge lies in identifying these people and encouraging these conversations to take place.

Basically there are a lot of people dying every year around the world and the UK is no exception.  People are generally living longer but they are also by definition older, frailer and sicker by the time they die and many may have lost the capacity to make decisions or the ability to communicate their wishes.  As a result people may be subjected to procedures, investigations and invasive treatments in the interests of prolonging their life way beyond anything that they would have wanted or indeed that any doctor would want for themselves.  There is signficiant anecdotal evidence that most doctors would not personally choose to undergo many of the treatements that they refer their patients for but in the absence of any information to the contrary we have to work on the principle of prolonging life – at whatever cost.

When mum was diagnosed (finally) we were advised to think about planning for the future and eventually an Advance Care Plan of sorts was forwarded to us (why the nurse who broke the news didn’t have one in her bag god only knows, it would have been about the only helpful thing she could have given us).  We duly sat mum down for a ‘family chat’ one day and there followed an agonisingly inappropriate discussion – we had left it far, far too late.  We were asking questions about whether she would want artificial feeding through a PEG tube or whether she would want to be resuscitated if she had a cardiac arrest and she had no clue what we were talking about.  Everybody was uncomfortable and even general questions like “What is important to you?”  and “If someone else was looking after you what would you want them to know about you?” were met with blank looks.  Eventually we realised we were beaten.

As a result we have been unable to plan.  We have to react to each change guided by a vague sense of what mum would have wanted if she was still her old self, combined with what she seems to tolerate now.  For example, I have alluded to the fact that she would previously have been mortified about looking even a little shambolic and I suspect that her old self would have said ‘shoot me now’  if I had told her that she would one day be wandering through the house with chipped nail varnish, greasy hair, odd socks and a back-to-front dressing gown billowing loosely around her portly frame.  But what do you know, she seems to be completely happy with her current circumstances and we have to resist the temptation to refer back to what she would have wanted, because we have no way of knowing for sure.

The advantage of an advance care plan is that we would have had some concrete idea of what she may or may not have found acceptable.  In fact any type of documentation or discussion about preferences for care can be invaluable for family when someone loses capacity or is close to dying.  It’s not legally binding (like an advanced directive) and is not as clinically distinct as a DNACPR (do not attempt cardiopulmonary resuscitation) form, but a general guide as to what is, or what would have been, important to that person can be a real comfort to those left making decisions on their behalf.  I have heard stories from both ends of the spectrum – patients who clearly stated that they wanted no intervention and to be able to die at home surrounded by loved ones and, less commonly, patients who want every single active intervention possible just to eek out another few hours on the earth.  There is no right or wrong way to make these decisions but leaving it to chance is reckless.  The old adage about death and taxes is true – this is going to happen one day, why would you gamble with something so important?

http://www.dementiachallengers.com/end-of-life-care.

http://www.goldstandardsframework.org.uk/cd-content/uploads/files/ACP/Thinking%20Ahead%20(3).pdf

https://www.macmillan.org.uk/_images/MAC136160115Your-life-and-choices-PPC-formFP20160823_tcm9-312039.pdf

https://www.alzheimers.org.uk/download/downloads/id/3423/this_is_me.pdf

 

And now for cheeriness……  A picture of a camel and a robin.  There.  Don’t say I never do anything for you.

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2 thoughts on “Advanced Care Planning – Thinking ahead

  1. We’ve been through all this recently, precipitated by a DNR discussion, initiated by my mother’s GP (with a copy of Atul Gawande’s “Being Mortal” on her desk). Fortunately, we put in place both kinds of lasting power of attorney around five years ago and these have been helpful because it is not a discussion Mum can engage with so we have worked it out on her behalf with her GP. We’ve ended up with a DNR in the Lions bottle in the fridge, so that any attending ambulance crew know what the position is, and a more nuanced Future Care Plan in her NHS notes, which is based on something the three of us agreed and signed and which is, in turn, based on the new ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) process. I understand this process is to replace DNR forms countrywide over time. As non-medics, we found it hugely helpful in making us think about the right things – http://www.bmj.com/content/356/bmj.j813 .

    Liked by 1 person

    1. Being Mortal is the most fantastic book – completely changed the way I practice medicine – really fantastic to know that you’ve got all of this sorted out – sounds like your GP knows her stuff

      Like

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