{"id":702,"date":"2020-01-27T17:07:28","date_gmt":"2020-01-27T17:07:28","guid":{"rendered":"http:\/\/www.tuffrey-wijne.com\/?p=702"},"modified":"2025-10-22T16:59:12","modified_gmt":"2025-10-22T15:59:12","slug":"end-of-life-care-planning-and-people-with-learning-disabilities-part-1","status":"publish","type":"post","link":"http:\/\/www.tuffrey-wijne.com\/?p=702","title":{"rendered":"End-of-life care planning and people with learning disabilities (PART 1)"},"content":{"rendered":"

Hands up. How many of you readers of this blog have an end-of-life care plan?<\/h3>\n

Hm. Thought as much. How about a written-down funeral plan?<\/p>\n

If your answer was \u201cno\u201d, you\u2019re not alone. When I ask this question in groups of people working in learning disability services, I can usually count the hands on one hand.<\/p>\n

If you didn\u2019t raise your hand just now: WHY\u00a0<\/em>do you not have an end-of-life care plan handy and waiting in your kitchen drawer? Is it because:<\/p>\n

(a) You don\u2019t like to think about death and dying. Let\u2019s pretend we are all immortal.<\/strong><\/p>\n

(b) You are nowhere near the end of your life. You’re fit and well and you’re hoping to live another 30 years. Plenty of time later. No need to get ahead of ourselves.<\/strong><\/p>\n

(c) You have no idea what your end of life will look like, where you’ll be, what you’re going to die of, what your needs will be – so really rather tricky to make a detailed plan.<\/strong><\/p>\n

(d) All of the above.<\/strong><\/p><\/blockquote>\n

Let me come clean here: I hadn\u2019t raised my hand either. My reason (if you\u2019re interested) was (c).<\/p>\n

I don\u2019t even have a funeral plan.<\/a> I did in the past (occupational hazard \u2013 hospice nurses were sent on courses where you had to visualise your own death and plan for it) but I no longer like the music I liked then, plus I\u2019ve acquired a husband and several children who might want to have a say in the matter. I probably should get a bit more concrete about this though \u2013 perhaps the reason for my lack of a funeral plan is a little bit of (b), mixed in with a concern that by the time my 30 years are up, yet another hymn will have become my favourite, so I\u2019d rather not commit to Mozart\u2019s Ave Verum Corpus <\/em>quite yet.<\/p>\n

(Quite fancy the cardboard coffin though. Decorated by my family. Let me put it on the record. Saves me writing it down and sticking it in the kitchen drawer.)<\/p>\n

Now, here is the question this is all leading to.<\/p>\n

Should ALL people with learning disabilities have an End-of-Life Care plan? Or a Death Plan?<\/strong><\/h3>\n

I mean all of them. Young and old. Healthy and ill. Regardless of whether they want one or not.<\/p>\n

This question has raised its head repeatedly over the past year. Here is an email I received from the mother of a young man with a learning disability and autism.<\/p>\n

What I am concerned about is that the residential home he is living in wants me, his mother, to fill in a form for a “death plan”… The manager said all residents are filling these forms in and it is important to get this in place in the “care plans”. Could you please tell me why there is so much emphasis on this “end of life” stuff, as the majority of these people are still young?<\/em><\/strong><\/p><\/blockquote>\n

Not surprisingly, both the mother and the son were rather distressed by being asked to plan for death.<\/p>\n

Then there are the questions I get from learning disability service providers. Here is an email from someone who works at a large UK-wide organisation. A few of their services had recently been inspected by the CQC. That\u2019s the Care Quality Commission<\/a>, responsible for regulating and inspecting health and social care services. Inspectors will come round to your care home, look at everything from paperwork to paintwork, talk to anyone from manager to staff to people-who-live-there, and then publish their verdict: Outstanding, Good, Requires improvement,<\/em> or Inadequate.<\/em><\/p>\n

The email said:<\/p>\n

During the initial feedback, the inspectors have commented about how we haven’t explored end of life with everyone we support and that we haven’t documented their wishes. I feel extremely uncomfortable with these comments – some of the people we support are my age and I would be very insulted\/upset\/angry if anyone tried to have a discussion with me about what casket I would want if I died.<\/em><\/strong><\/p><\/blockquote>\n

Another manager I spoke to recently said:<\/p>\n

Our service has produced easy-read end of life plans for people. We discussed them in a home where six people with learning disabilities live. Two people wanted to do the plan, but the other four didn\u2019t. When the CQC inspectors came, they marked us down for only having an end of life plan in two people\u2019s files, not all six.<\/em><\/strong><\/p><\/blockquote>\n

A student learning disability nurse told me a couple of weeks ago:<\/p>\n

On one of my placements, ALL residents had an end-of-life plan in their personal files. Put there by the manager, presumably. They all looked identical.<\/strong><\/p><\/blockquote>\n

Oh dear. What is going on? It\u2019s no wonder that the most frequent question I get from learning disability services is\u00a0\u201cDo you have an easy-read end-of-life plan that we can use?\u201d<\/em><\/strong><\/p>\n

As it happens, there are plenty of templates around. The PCPLD Network has collated some of them on this page<\/a>.\u00a0But I feel uncomfortable with all of them, because of two fundamental problems.<\/p>\n

Problem 1: If you standardise personalised care, it is in great danger of becoming impersonal.<\/h3>\n

If I were an inspector of a home of six people with learning disabilities, and they all had an identical-looking end-of-life plan in their notes, I would hear alarm bells. Documenting someone\u2019s end-of-life wishes should come at the end of a process of discussions and explorations, and it should be regularly reviewed. The format of documentation should fit the person. A document, easy-read or otherwise, is not the starting point. It\u2019s the end point.<\/p>\n

Problem 2: Most of these documents are not End of Life Plans. <\/em>They are Funeral Plans.<\/em><\/h3>\n

Nothing wrong with having a funeral plan, but don\u2019t call it an End of Life Plan. And definitely don\u2019t call it an End of Life Care<\/em><\/strong> Plan. The trouble is that\u00a0I\u2019m not sure what people actually mean when they talk about \u201cend of life care planning\u201d. (And with people, I mean everyone. Families, service providers, inspectors.)<\/p>\n

Confusion reigns\u2026<\/p>\n

CONFUSION: What is (and what isn\u2019t) an end of life care plan?<\/h3>\n

What should go in it? When should it be made? Crucial questions. I\u2019ll try and answer them in my next blog post.<\/p>\n

CONFUSION: With regard to end of life care and planning <\/em>for the end of life, what exactly are the CQC requirements?<\/h3>\n

What is expected of services that provide day-to-day support for people with learning disabilities of all ages (including residential care)?\u00a0This one was intriguing, so I did a bit of digging. First, I looked up what the CQC inspection criteria actually are. I found that for adult social care services, there is indeed this inspection question (see p.17 of this document<\/a>):\u00a0\"\"<\/em><\/p>\n

But whilst most other \u201ckey lines of enquiry\u201d apply to All Services<\/em>, this one applies only to Services that provide care to people at the end of their lives. <\/em><\/p>\n

I searched on. What do they mean by \u201cthe end of their lives\u201d? I could not find a description of this anywhere in relation to adult social care services, but this is how \u201cend of life care\u201d is defined in relation to hospital services (and it’s a good definition, used widely):<\/p>\n

\n

End of life care involves all care for patients who are approaching the end of their life and following death. (\u2026) The definition of end of life includes patients who are \u2018approaching the end of life\u2019 when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:<\/h4>\n