Dying Matters - Let's Talk About It

16th January 2012

Categories: Advocacy,

One of our dedicated team of Independent Mental Capacity Advocates (IMCAs) recently provided advocacy for an elderly man who was dying of cancer. Her experience highlights the importance of End of Life Care and the difference that early conversations can make to people’s choices at the end of their life.

Edward’s Story:

As part of my role as an IMCA, I met a man in December who was 88 and dying of cancer, with only a few weeks to live. A decision needed to be made over whether he would prefer to die in the Nursing Home where he has lived for a few months, or to go to hospital and to undergo the trauma of a possible attempt to resuscitate. Without clear indication to the contrary, the Ambulance Service would have to take him to hospital if, for example, he was in respiratory distress at the end of his life. 

The IMCA referral was made by Edward’s GP, who was concerned about him undergoing painful and potentially unsuccessful attempts to resuscitate him in A&E. Such an attempt, even if successful, would only prolong his life for a short time and it often leaves patients in a great deal of pain. If the decision was made for him to die in the Nursing Home, End of Life Care could be provided to avoid any unnecessary distress.

Edward was not able to tell me his wishes and I understood that he had not left any Advance Care Planning, either with his GP or with the people who used to support him when he lived in the community.

During my meeting with Edward, he referred to his leg and to his arm a few times, and showed me marks on them, but kept telling me that there was no pain. I attempted to speak with him about his wishes regarding his last days but he laughed and spoke of other things. Later on he said that his brother was born in 1913 and was 10 years older than he was. He also told me that his brother was dead. I asked him if his brother had died at home or in hospital and he said: “at home”. I asked him if this was a good thing; he said: “yes” and laughed but then did not want to speak anymore.

I felt that this was as much as he could express about wanting to die peacefully in the Nursing Home rather than undergo painful and short-term attempts to prolong his life. This was the judgement of his GP too and confirmed by the Nursing Home staff.

I did not challenge this option but I felt it would have been much better for him if he had been able to have this discussion in the past, so that his wishes had been known towards the end of his life. When a person has the mental capacity to do so, their choices around resuscitation and End of Life Care can be recorded early on, or when they first move into a home.

Knowing Edward’s wishes for the end of his life would have allowed the medical and care staff to confidently make a decision in his the best interests, which is why End of Life Care is such an important issue to bring to public attention. 

Outside of my IMCA work with VoiceAbility, I am part of an organisation called Dying Matters. This is a broad based and inclusive national coalition of more than 15,000 members, which aims to change public knowledge, attitudes and behaviours towards death, dying and bereavement.

As advocates, we are in a position to support people who want or need to look at these issues. Clearly expressed wishes help others to make informed decisions and may also bring peace of mind for the individual, knowing that things have been taken care of. 

The website pays specific attention to people with dementia and refers to the booklet Difficult Conversations with Dementia. This is helpful for supporting people like Edward, whose wishes have not been identified early on.

End of Life Care for Adults is another useful site for advocates supporting a person to address these issues. The site enables advocates to download leaflets on many relevant topics.

As an IMCA, I have been involved in many decisions regarding End of Life Care for people who lack mental capacity. Sometimes people are not only unable to make decisions themselves, but also have no family or friends who know what the individual’s wishes are. This work has helped me to understand how important it is to make choices and express clear wishes earlier on, so that health professionals are not faced with making difficult decisions on a person’s behalf, without knowing what their wishes might have been.