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 examples of sentences to use in this printable pdf document.
- Acknowledge their feelings: When someone is upset, you don’t want to just be silent, as this will create tension and trigger fantasies that they are unwelcome on the part of the patient. You don’t want to start filling the space with words either, which can make it feel awkward. Just acknowledge their upset (or other feelings) For instance:
- Validate their feeling: The idea here is that you give a sense to your patient that it is okay to feel what they are feeling. That feeling something is not good or bad, it is just a feeling. It is NOT okay to murder someone but it is okay to feel murderous against someone as long as you don’t act on it. It is just a feeling.
If you show them it is okay to feel their feelings, they will relax into them too and make room for them. As mentioned earlier, this reduces their internal fight and, to be honest, they already have enough on their plate so this can only be a good thing.
- Expand on it: Ask further questions in order to know more about what they feel, what their fears are, who and what they worry about and why they do what they do. Understanding where their behaviour originates can help you manage their behaviour in a compassionate, understanding way. However, make sure you only invite them to expand on their feeling to the extent that is appropriate to your role.
- Refer on: Being able to find out more about how your patient feels is an invaluable tool that will help you dramatically improve their care, as well as making you feel satisfied with your job. However, there is a limit to what you can afford in terms of the time you have available for each patient, and the extent that you feel confortable within the confinement of your role.
However, you may well find that patients are in need to talk to someone, but you may not be the appropriate person for this, as this may be beyond your qualifications, role, demands and comfort zone. When this is the case, offer your patient the possibility of taking the conversation further to a qualified and suitable professional. All the legwork you have done so far with automatically make your referral a well qualified one, where you will be able to give the relevant professional all the background information they need. Solid referrals become a lot more successful and efficient than wishy-washy ones. And believe me, when healthcare professionals who are scared do not take the time to investigate, these result in many wishy-washy referrals that wastes their time and that of the service they end up referring to.
Most healthcare professionals feel very comfortable within the technical competencies of their job. However, when it comes to having difficult conversations of an emotional nature, they feel stuck. The main reason reported by the majority of professionals is that they are afraid to upset the patient.
As laid out above, they patient is likely to be upset already and inviting them to have a conversation about is will only trigger the expression of this. This can be an opportunity to have a deeper meeting with them, which can result in a variety of benefits for them and for yourself as a professional.
The process laid out above can help you ‘hold’ the dying person in their feelings and transform your practice immediately.
Make sure you download the following step-by-step guide to help you implement this process and start benefiting today.
However, if you want to learn to turn difficult conversations with dying patients into meaningful encounters and an opportunity to deep connection, have a look at my Managing Difficult Conversation workshop.
Urtzi Cristobal is a psychotherapist, supervisor, trainer and international speaker who has been working in Palliative Care sinse 2007. He has trained many healthcare professionals in creating meaningful encounters with dying patients.