Difficult Conversations - Talking about end-of-life wishes.
What’s the best way to talk about end-of-life wishes with a person living with dementia who doesn’t want to talk about it?
This is a difficult and sensitive situation and sometimes very frustrating for the care partner/Next of Kin who feels responsible for the person they care for and who wants to meet the wishes of what’s important to the person.
It’s worth being curious and asking yourself “Has the person always found it difficult to talk about their end-of-life wishes”? If so, why is this?
Has the person always found it difficult to talk about their end-of-life wishes?
Death is still a taboo subject. It’s a painful and emotional subject to talk about. Talking about it won’t make it happen though for some people they just can’t go there. This can be driven by fear, deep down in their unconscious they know it’s going to happen (everyone dies). Though is pretending it’s not going to happen a way of coping and protecting oneself.
Another possible reason and one of the unknown and not often spoken about symptom of dementia is called anosognosia. This term “anosognosia” refers to impaired insight or unawareness that the person has dementia and the deficits which relate to dementia. This is different to denial.
It may also be that it’s a cultural thing. “We just don’t talk about death, we never have done”.
Here are a couple of tips which have been used to open up a conversation about end-of-life wishes, with a person living with dementia:
- Start listening for openings
Start to listen for openings that the person may want to talk about it eg, when they ask if someone they know has died or still here, when they reminiscence and refer to someone they know who has died, are they watching a TV, heard on the radio that a well-known celebrity has died – how do they react? You could link it to what the person sees/hears/feels with gently encouraging a conversations with “Oh we’ve done that, it was beautiful – it was on our bucket list”. - Ensure the conversation is less formal
Ensuring that the conversation is less formal, and the person is calm and relaxed is really important. Starting off a conversation when the person is stressed and upset is not going to get very far, and you are both going to feel upset, frustrated, and angry. - Talk about your own end-of-life wishes
Talking about your own wishes may encourage the other person to open up. “I love this song, it’s one of my favourites. I’m going to have this at my funeral.” is a great example. Or if it’s really difficult for the person to talk to someone they know well (maybe, they don’t want to upset the person and it’s a way of protecting them). Would they talk to a health care professional? - Leave prompts around
Leave prompts around, leaflets/ booklets etc. See if the person engages and what they do with them. - Ensure that the person is supported to make decisions
We must also ensure that the person is supported to make decisions. We must give the person all the practical help they need before we decide that the person can’t make a decision e.g. can they hear properly? Is the person in a calm and balanced state? Do they understand the information? - Speak to other family members
Speak to other family members, friends and trusted people – can they contribute with making decisions so that you feel the responsibility is shared?
Documenting the important questions on how a person feels
An Advanced statement is a non-legal document that may be useful for yourself or for people living with dementia who are well and want others to know their wishes. It’s a document that suggests important questions on how people feel, their preferences, values and beliefs and what’s important to them, such as:
- Where and who would you like to be looked after such as at your home, in a hospital, in a nursing home or hospice?
- Religious, cultural and/or beliefs you hold dear to yourself
- Things that are important to your identity
- Things that are important to you such as “who will look after my children/pets when I’ve died?”
- What’s not important to me or I don’t like, such as talking medication, needles, certain foods or people?
Advanced Statement Templates
Here’s a couple of great Advanced Statement templates from Compassion in Dying and Dementia UK.
About Lancashire Dementia Training and Coaching
Lancashire Dementia Training and Consultancy is an organisation run by Rachel Yates Hoyles, who has first-hand experience of supporting a family member living with dementia, plus years of training and experience in this field.
“We hear so much these days about dementia and probably all know a person and family that is affected. There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025 and 2 million by 2051.
“225,000 people will develop dementia this year, that’s one every three minutes. Lancashire currently has over 10,300 people with a dementia diagnosis of which two thirds of people live at home.”
Rachel is passionate about raising awareness of dementia and sharing dementia knowledge to empower others.
She offers a range of training and consultancy sessions which are bespoke to you, your staff and/or service needs. She uses a flexible and friendly approach and can adapt learning sessions and conversations to encourage a positive and fun, learning and inspiring culture that supports creativity and innovation.