Areas for guidance
End-of-life care form continued (Adapted from St. Vincent’s Athy)
Identifying what is most important to the person when they become unwell can be a very broad topic. The person might want to talk about and focus on what is meaningful to them in their daily life before they can specifically focus on what would be most important to them if they became seriously ill. People may want time to consider this question and revisit the conversation in order to allow the healthcare team develop a deeper understanding of what is most important to the person. “How do you see things going from here?”, “What are you hoping for?” “How do you see the future?” “Let me reassure you that we speak to all residents about their future care and this conversation has not been triggered by any bad news about your health” “you said you don’t want to be a hero, what do you mean by that”. “Could you explain what you mean you said you don’t mind if you slip away and die alone” Explore if they would prefer to remain at home or be transferred to hospital for more agressive/ burdensome treatment. It is important that the person understands that their care needs will continue to be met and their comfort will be prioritised at all times, regardless of whether they wish to have active treatment or not. In discussing these questions, it can be helpful to ask the person if they ever cared for someone who was sick and what their feelings were about this experience. This may help the person identify what was ‘good’ or ‘bad’ about that situation and what they would want for themselves. The issue of capacity should be considered when discussing future care. This should be done by the team and guided by upcoming legisation (Assisted Decision Making (2013) Bill) and the HSE Consent Policy (2013).
“Even when we are not providing aggressive treatment, we will always take a very active approach to making sure you’re very comfortable and that any pain or other symptoms are well managed.”
When enquiring about what is most important to the person when nearing the end of their life, it can be helpful to think about their final days and hours, as they may wish for different things at different stages of the journey.
Environment “where would you like to be, and if home is not possible, how could we create a comfortable place. e.g. separate room, items from home, beside altar, candles, music, smells, devotional pictures?” People “Who would you like to be with you if you were at the end of life/dying. Is there other family and friends you would like to come when you could still tolerate short visit? Are there people you don’t want around?” Actions “Are there any spiritual or religious practices that you would like to be carried out before or at the time of death i.e religious leader visits, spiritual rituals, meditation?”
Exploring the person’s worries and fears about death provides an opportunity to discuss any concerns they may have about the person’s last few days or final minutes. There may also be specific disagreements or regrets that they may wish to resolve to allow a sense of closure to their life (via. Letter, telephone or person).
“Is there anything you are concerned about when you think about dying...big or small worries?”
Asking someone about what their wishes are in relation to after their death can help the person feel in control right to the end of their journey.Some people may have very clear preferences about their burial and related rituals.
“What arrangements would you like to be made...appearance and clothes... location of removal...type of burial...type of spiritual service...readings, poems and songs?”
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Facilitating discussions on future and end-of-life care with a person with dementia
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