STOP FEELING PARALYSED WHEN YOU SEE A DYING PATIENT GET UPSET

Every healthcare professional who works with dying patients feels relatively well equipped to deal with the technical aspects of their job. After all, they have been well trained and they continue to regularly update their knowledge and expertise through continuing professional development. 

However, the main issue that consistently brings stress to their table, regardless of their actual role, is not knowing how to deal with the patient’s emotions. 

One thing is administering medication, changing a dress pad or caring for a lymphoedematous limb, and a very different one, having a patient helplessly look you in the eye and anxiously say they are afraid of dying. 

Most healthcare professionals understandably struggle with this, to the extent that they feel paralysed when it comes to communicating with such a patient. 

Holding on to what they can do well is a gracious way of getting out of a sticky situation and for as long as the conversation is brought back to the professional competence of the healthcare worker (i.e. the medication, the pain, the oedematous leg, etc.) it gives them a sense of doing a good job in terms of what is required.

However, as well as solving a problem, it generates another one. A sense of helplessness and inadequacy that is difficult to own and share with others. 

Having spent years training healthcare professionals, I have had the opportunity to observe that this sense of inadequacy and shame around not knowing what to do is something that professionals hardly share with each other. It often comes as a surprise when they get together on a training course and they discover that many people struggle with similar issues. 

At the centre of the struggle of not knowing what to say lies the fear that if you say the wrong thing the patient will get upset. 

This results in making sure that all conversations to do with the patient’s emotions and feelings about dying are actively, but subtly, avoided. However, this process is exhausting. Not only do you need to control where a conversation goes, you also often feel bad about being slippery in your dealings. 

UPSETTING THE PATIENT MAY BE AN OPPORTUNITY

People are so focused on not upsetting the patient that they are not really that sure about what would they think would happen if they actually did upset the patient. Would the building collapse? Would the world stop? No, it wouldn’t. Once the patient is upset, you just deal with it. The fear of what will happen if… is a lot worse than the thing actually happening. Once it does, they just deal with it.

I would go a step further. Not only is it not the end of the world if a patient gets upset, but furthermore, it is an opportunity to connect with them on a deeper level.

The likelihood is that before you even have a conversation that ‘may upset them’, they are already upset anyway. They are often in pain, can’t sleep properly, the future is dull and they have never had any experience of dying before, so they can be pretty overwhelmed. 

Normally, they keep this to themselves and they try to be in control of their feelings, however intense this may be. But sometimes, these become too intense and they just come out. 

On the one hand, allowing them to do so helps them release a lot of pent up tension and they tend to feel lighter as a result of it.  On the other hand, if they can see you can hold it and not freak out, they will be able to make room for it and let it out.

When a patient shares intense feelings with you, this can enable a deep sense of connection between the two of you and they can be eternally grateful to you for this. The likelihood is they are not sharing these feelings with their family members because they do not want to ‘burden’ them. 

The deep connection you can forge with a patient who experiences they can be upset and yet, held and understood by you can completely change the dynamic between not just the two of you, but all your team and all their family. 

BENEFITS OF CONNECTING DEEPLY WITH A DYING PATIENT  

The benefits resulting in a deep meeting with a dying patient are many, and they work on both parties.

FOR THE PATIENT

• They experience there is a real person with them who is genuinely interested in what is going of for them. Most patients feel alone and research shows they only share as much as 40% of their concerns with healthcare professionals. They have never died before and they don’t know how to do it, so a solid presence can make a huge difference.

• Having someone who is showing them that listening to what they have got to say is worth it plants a seed in their unconscious mind that what they have to say is worth saying. As a result, they begin to listen to all those thoughts they had tried to block until now. 

• If they dare to share their innermost thoughts and feelings with you and they see that you don’t walk away, nobody dies and the world does not stop, they now have a real experience that nothing substantial happens when they talk about how they feel. They more they do this, the stronger their conviction becomes that it is actually okay to talk. That saying words out loud is just that: saying words out loud. 

• This one follows from what we’ve just seen. If they see they can talk to you and nothing terrible happens, they will feel freer to take some of those risks with other people other than you. This includes their family members. If they begin to have deeper conversations with their loved ones, the possibility of deep, intimate and healing interactions becomes more of a reality.

• Healing relationships and conversations are a gift for everyone involved: the patient, yourself and their family. Those left behind, mainly bereaved relatives, now have a bank of beautiful memories and experiences that can tint their bereavement with a sweeter flavour, rather than with a bitter one. 

FOR YOU, THE PROFESSIONAL

• A patient that is able to open up with you and accept their reality, stops fighting themselves and the situation, and this can dramatically change their medical care. 

Let me illustrate this. I am sure you have know patients who are really anxious and scared about their situation. They are so on edge that turning them in bed becomes an impossible task, because they complain about pain to an extent that you are convinced it is a bit over the top. 

These patients, and others who are also scared, can request breakthrough medication to its maximum allowance and even more. When this behaviour doesn’t match their real medical needs, these are often seen as complex patients and words such as total pain, etc., emerge.

I once had a patient who was on enough medication to put an elephant to sleep. In addition to being a cancer patient himself, his wife had died a year before. The nurses who looked after him complained that they couldn’t do anything without him being in extreme pain, which he needed medication for. However, a few weeks after I started working with him, his medication levels started decreasing. He spoke about his grief and cried and he began to accept his loss. His relationship with the nurses changed dramatically over time, he was on little medication and he could be dressed, washed, turned on his bed, etc. with no problems.

• A patient that can open up to you and see you can ‘hold them’ begins to trust you more and more. The more they do this, the more they will tell you about things they don’t tell anyone else. As a result, you can get a lot more information about advance care planning, what their preferred places of care and death are, what there might be under an apparent lack of cooperation when it comes to taking certain medication, etc.

• Not having to control conversations and make sure they don’t end up where you feel deskilled is a huge benefit for you and your practice. Being able to stay with your patient with difficult feelings and seeing them as an opportunity for a deeper exchange is a game changer. The secret feeling of inadequacy and emotional incompetence transforms into a sense of fulfilment and intimate encounter with dying patients. 

WHAT TO DO WHEN A PATIENT IS UPSET

The first thing you need to understand when a patient is upset, and this may be counterintuitive for you, is that YOU DON’T NEED TO DO ANYTING TO SOLVE IT. They are just upset and expressing what is going on for them, as well as releasing tension. The fact that they, and you, have been trained for a lifetime to think that being upset is bad doesn’t mean that it is. 

I can only outline the general steps to follow here but you will need to bear in mind that the specifics may be adjusted for each individual patient. I am also including a summary of this steps together with some example of sentences to use in printable pdf document. Put your name and email address below to grab this free downloadable pdf.