This isn’t a topic that people usually talk openly about. In fact sometimes, people start talking about this topic a little too late to make an impact, that is why I thought I would share some of my thoughts and experiences. This topic is ‘dying’. Unfortunately (or fortunately depending on which way you want to look at it) we are all going to die at some point.

I never really thought much about this until I started working as an independent advocate. In my personal life I haven’t really experienced much death, the death of my grandparents happened when I was a lot younger but more recently last year, I lost a friend to suicide. I now think it is really important that people around me know what I would like to happen when the end of my life is near.

People have a right to make decisions about their future and this includes the type of care and support you may or may not want. Some people may not feel comfortable having the conversations or even writing down a plan about the end of their life. However in my experience as an advocate, sometimes people’s health can decline at such a rate that they lose the capacity to make decisions themselves and this presents difficulties in trying to work out the care and treatment pathways the person may have wanted.

There is legislation that provides a framework for making decisions when people lose the capacity to make decisions themselves. This is called the Mental Capacity Act 2005. The Mental Capacity Act also defines the framework for people to plan for a time when they may lose capacity to make decisions themselves. The Mental Capacity Act has five key principles which must be followed:


  1. Assume capacity

It must be assumed, unless proven otherwise, that people have the capacity to make decisions themselves. Just because someone has a disability or in unwell, does not mean they can’t make decisions for themselves.


  1. Take all practical steps

People have a right to support to make decisions and all practical steps should be taken to support the person to make the decision themselves. This could be making easy read information, writing things down or even relaying the same information again at different times of the day.


  1. People have a right to make unwise decisions
  2. Best Interests

If someone does lack the capacity to make a specific decision at the specific time the decision needs to be made, then the decision must be made in the person’s best interests. The Mental Capacity Act lays down a bets interest process that must be followed and recorded.


  1. Least restrictive options

If a decision is being made in a person’s best interest, then this decision should have considered the least restrictive option on the person’s rights and this option should be favored.

The Mental Capacity Act also gives people the right to support from an independent advocate should certain decisions need to be made that the person cannot make themselves. The advocate will support the person to have their feelings and wishes heard when they have no family or friends who are able to be consulted with.



Toby was a gentleman who lived what could be described as a simple life. Toby had lived in the same rented rural cottage for many years. He had lived with his mother until she passed away and then continued to live alone. He had never known his father. Toby’s rented cottage grew into disrepair as it had damp, old electric wiring and Toby collected lots of belongings which took up a lot of space in his home.

Toby worked for a local business man doing odd jobs, and in his spare time, he would drink in his local pub. Work Pub, Work Pub was Toby’s daily routine and it was not uncommon for him to leave the pub and walk to his boss’s home for a lift home rather than driving under the influence of alcohol.

One night when Toby headed from the pub to his boss’s home, it was particularly cold. Toby went to the back door as usual but unfortunately, Toby’s boss was away for the night and there was no one home. Toby suffered a stroke and lay out in the cold all night until his boss arrived home the next morning and alerted emergency services.

Toby was admitted to hospital. His stroke left him with very little verbal communication and unable to retain information or make decisions. Toby had a formal capacity assessment which concluded he was unable to make a decision about his care and support needs including future accommodation. Toby had no family or friends who were appropriate to consult with in relation to this decision so the social worker referred Toby to People First for an Independent Mental Capacity Advocate (IMCA). The role of the advocate was to gather Toby’s feelings and wishes to support the social worker to make a decision as to where Toby could receive the level of care and support he now required.

There were three options given to the IMCA:

1. Toby to return home

2. Toby to move to a care home in his village

3. Toby to move to a care home in the nearby town


The IMCA met with Toby on many occasions. The IMCA took photos of his home and the care homes and a map of where they were all located. The IMCA consulted with Toby’s boss and spoke to the landlord of his local pub.

The IMCA was able to ascertain from Toby that it was important to him that he stayed in his village. He loved hunting and agriculture including farm animals and tractors. This was confirmed by his boss and the pub landlord. On reviewing Toby’s needs assessment and speaking to home care agencies, it was evident that the level of care that Toby needed could not be provided in his home due to the state of disrepair his home was in.

The IMCA was able to ascertain that there were many belongings that were important to Toby including photos of his mother, school reports and paintings that he had done years previously.

The IMCA produced a report of her work and attended a best interest meeting with the social worker to represent her findings. The social worker reviewed the IMCA’s findings and decided that Toby could move to the care home in his village and he would be given support to access his local pub.

The social worker and IMCA visited Toby’s home and collected personal belongings for him to make his room more homely.

Toby settled well into the care home however his heath never recovered. Six months later, Toby passed away. Using evidence gathered in the IMCA report, the social worker was able to arrange for Toby to be transported from the Funeral home to his funeral in a trailer being pulled by a tractor through his village.

Story by: Lindsay Graham, Advocacy Manager