Last week, I attended a psychologist society seminar on how to work with people at the end of their lives. The presenter was a clinical psychologist working in youth oncology hospital departments.
These are my notes:
Uncertainty is highly correlated with anxiety and avoidance, and
uncertainty only lives in the future, so connect to the here and now.
We are not going to fix things, we are only going to learn to live in this environment. As humans, we find it more difficult to stay in the present. Most people would easily spend time thinking about the past and the present. What are you going to miss out on if you do that? ask them. You may be worried about what is going to happen to your people when you are gone, but you are missing out on actually being with your people right now because you are distracted by thoughts of the future.
In this present moment, what do I feel I am connected to?
Basic sensory things work well, especially when patients lose capacity (physical and emotional), for even ten seconds at the time, taking pressure off them to do it longer if they can't. The hearing sensory stimulation works really well.
Palliative care specialists will know how they will be cared for if the patient can't breathe. These are people worth contacting early in order to gain such information and lessen anxiety.
Anxiety for a duration of about three days until they devise a plan is normal, don't pathologize normal reaction.
Existing psy preconditions like anxiety will be exacerbated.
Relationships can go either way: Turns bad when one partner wants to talk about death & their legacy, and the other not - goes in either direction. Sometimes it is the partner who wants to talk about legacy and the other person no, but sometimes, it is the patient who wants to talk about it and the family say things like 'you will be better soon', not allowing her/him/they space to talk.
Naming things in therapy can be very useful otherwise anxiety grows on each side.
Suicidality is an escape fantasy, it is raised by 90 percent of her patients, but it is often a fleeting thought. How to handle it: talk about their idea of escaping, 'where I am is really hard and I like to think I am somewhere else', wanting to find a better place, 'doing' something about it, 'I found a solution'.
Ask the patient: what do you think is going on with you when that thing (these thoughts) turns up? Escape fantasy.
People say this is really helpful to know it is fantasy escapism, because when it happens to them, they know where it comes from.
Diffusion - learn to bring distance to your thoughts. Meta cognition: 'I see 'brain' what you are trying to do, giving me this picture that I am a loser, or of who will be there around my death bed (none of it having actually happened), but, no, I am going to chose not to do that'.
Awareness that thoughts are just thoughts and we don't need to engage with them, that we can watch them rather than getting bossed around by them.
Realisation that ok my brain is doing its job, acknowledgement, 'ok thanks for that but I can chose not being caught up in these kind of thoughts'. Metacognition.
Reverse: 'oh thank you 'brain' for this nice image', so you can see that it can look good when you reconcile with your brain.
Yet, some of these thoughts have purpose and meaning, so they should not all be diffused.
Societally, we have an avoidance on difficult thoughts.
Psychological pain will shift around in distance and will be linked to pain levels.
Patients need space and capacity to experiment unpleasant, painful feelings, sensations, and emotions.
This is meant to happen but in this space, environment we are sitting in, when you don't have much energy, what is the cost of this fight (avoidance)?
Acceptance brings anxiety down.
Metaphorical job of saying 'I see you, I see what that is'. Naming things and giving them a framework.
What if this is as good as it gets - concrete acceptance and real difficulty in life/life experience.
What makes you feel good (sensations, here and now): get into a rally car, go to a concert, ok. More important than existential thinking.
Being upfront about the reality of getting rid of anxiety/low mood/urge to fight against the feelings.
Show that you can be taken out of your family in the here and now by being caught in your thoughts.
Paradox of time: I have limited time so everything needs to be meaningful but I am paralysed thinking about what is meaningful because I have limited time. Nothing seems meaningful enough. Then, they do nothing, Netflix for two weeks, and the guild and shame cycle kicks in.
What is meaningful for six months, for one week, what comes in the way of this?
What is meaningful for you, no one really knows when asked that way, but if you say what feels important to you now, what you want to spend your time on, they will know better. What were the things you were driven towards?
Next time you see them: what happened with this value chunk?
Work around legacy. You need to feel good to do this really hard work. They may not be able to do it, especially if they are unwell. Halve it, then halve it again.
What do people around you like or value about you. This is your legacy too.
Committed action: what is the cost of doing this or that, is it ok with you?
Keeping in mind that the cost to the patient is not necessarily what you would see as a worthwhile cost yourself (eg guy who go to the concert and smashes himself with meds and has to go five days in the hospital after and thinks it is worthwhile)
or it could be:
'I wish to be well enough to go to my grandchild birthday party'
Religiosity - often people come to see us in order not to think about it. People are often pissed off at god. If you have an agnostic attitude, ask them to educate you on what they believe. Metaphorical work so you can understand how they make sense of things in a meaningful way to them, as long as it helps them.
Exploring cost/benefit: I value going out with my mates but can't do it because I am too unwell.
ok, so what happens when you are fatigued. I am tired, ... so ok, so what happens then.
I am grumpy, ... ok so what happens then.
I may need a lay down.
Can't you do that with your mates?
ok, so it does not prevent you from doing it.
Past trauma - this is not useful to unpack this right now. you don't have capacity.
Sleep difficulties linked to pain medications wearing off at 3am, or rumination about what is going to happen, temperature regulation issues.
