Today I sat down for the first time at 14:30! I felt very sorry for myself after spending the entire morning gardening like some Gardening-guru with a Youtube channel. When I finally sat down, it was to chat to Dr Jes. She looked very sleek and glamourous in her winter outfit with shiny black hair and positively glowed from cleanliness. I had melted into a chair, mud all over my pants, a hole in my gardening glove and smelled like fertilizer. Luckily, this inequity did not stop us having a meaningful conversation. Jesne is preparing to talk to a group of oncologists about what language to use around palliative care. Many people (doctors included) hear the word “palliative” and then see visions of angels of death. We tend to think that once you start palliative care it is a slippery slope to eternity. But, if we change our language, we will change the narrative and in this way, we will get to help more people, and in time.
While I am all inspired with her and her attempt to shift the narrative, I thought about how we can change our own conversations with our people when it comes to death, dying, suffering, pain etc. When it comes to all those topics we skirt around and don’t want to talk about, perhaps we could start asking our loved ones important questions like this?
- Are you afraid of dying?
- Are you afraid of the dying process?
- Have you got an advanced life plan that you have signed?
- If not, what kind of advanced life plan would you like? Would you like intervention to the last minute or do you want quality time rather than quantity?
- Do you have any funeral cover or plans to which you have been contributing?
- Have you ever thought about your funeral and how you would like that to play out?
- Do you even want a funeral?
- What are your fears and worries about the next chapter in your life?
- What would a good day look like for you during palliative care and how can your loved ones assist you with achieving that?
- Do you want to be buried, cremated or aquamated?
- Do you have a specific idea of what types of intervention you would like, e.g. yes to antibiotics but no to ventilation, while you are receiving palliative care?
- Have you got a power of attorney in place?
- What is your understanding of your illness and where you are at right now?
- What do you think would make you feel ashamed or humiliated if you had to depend on others?
- How do you think we can help you maintain your dignity if you were ever in a position where you were not able to complete tasks of daily living?
- Are there things on which you are not willing to compromise?
- How can we ensure that we create a space for you where you will feel safe?
- What do you think will make you a burden on others and why do you think that?
- What do you think your priorities are for the next stage of your life?
- If you needed to care for a loved one, would you experience this task as a burden?
- Do you understand that people often get caregiver burnout, but this does not mean that they do not love you. Would you understand if your loved ones made a decision for you to receive care at an in-patient unit or would you see this as rejection?
- If you /we decide on a home-care situation by loved ones, can we leave an option open for an in-patient respite care option when caregiving becomes too difficult or exhausting?
- How do you think you can receive an additional layer of support while you are not well? Have you got a specific club, religious group, social worker, psychologist or counsellor that you trust?
- Are you scared of pain and its management now that you are facing this part of the disease’s progression?
- From what kind of support do you think your loved ones will benefit?
- Is there anyone you particularly do not want to have contact with or certain people you want to avoid?
- Are there any hobbies, TV-programmes, books or activities that will make you feel like you have a purpose and/ bring you enjoyment?
- Have you got any regrets that you want to talk about?
- Do you feel you need to ask someone’s forgiveness?
- Do you feel you want to forgive someone or do you want to talk about why you battle to forgive this person?
- Do you feel you want to say thank you to someone specific whom you have not yet thanked or who might not be aware of your gratitude?
- Is there anyone you would specifically like to see in this time?
- Are there any items that you want near you, or that you want to surround yourself with in this time?
- Is there any unfinished business with which we can help you?
- Have you got any achievable goals now and how can we help you achieve them?
- What outcomes are unacceptable to you? On what are you willing to compromise and what are the non-negotiables?
I know, these are not the easiest subjects to talk about and we often think we know… until we realise that we don’t.
Shying away from hard conversations only make difficult things harder, but being courageous enough to talk about things brings clarity, freedom and connection. It is always worthwhile.