Weirdly, often the more you care about someone, the harder it can be to talk about serious illness, theirs or ours. You don’t want to hurt or be hurt, or to bring up ‘difficult’ or ‘distressing’ topics; yet silence is no one’s friend in these situations. Only by talking, at least a little, can people know what you or others want and feel.
There are several types of conversations that are important. One is the conversation about wishes for future care, which often results in a written document, like an advance directive, outlining those wishes. Another conversation simply acknowledges and shares the reality of what is going on, which can and does change over time.
If you are the one with the illness
Those around you will often take their cue from you. If you don’t want to talk about what is happening or don’t want to know how you are doing, no one will likely bring it up as they respect you and don’t want to upset you. The sole exception would be someone trying to understand what you might want if you are unable to speak for yourself, a conversation that is described below.
However, think hard if you are refusing to acknowledge or talk about what is happening. The hard truth is that it is happening whether you talk about it or not. It often does help to talk about it. That may be easier at first with a friend, or clergy member, or a member of your healthcare team who is particularly sympathetic. They are less likely to react emotionally to you, which will make it easier for you to say what you have to say. Those conversations can serve as ‘dress rehearsals’ for what may be more difficult or painful ones. As humans, we all have the full range of emotions, from despair and pain to hope and joy; almost always we grow closer when sharing with another.
Family relationships can be complicated and sometimes it is useful to use a surrogate spokesperson to deliver difficult information. This could be a family friend, clergy, a patient advocate, or someone from the palliative care or hospice team. The important thing is that they can share that which we are having difficulty saying ourselves.
CaringInfo has created a resource to help document the outcomes of your conversations in advance directives, healthcare powers of attorney and living wills, POLSTs, and DNRs.
If you are in the inner circle of someone with a serious illness
Again, there are at least two types of conversations, one eliciting information about what the other person would want if they were unable to speak for themselves, and the other just talking about what is happening. In many ways both conversations call for the same set of skills on your part.
If you are trying to understand what the other person would want if they were unable to speak for themselves, you may need or want to take the initiative in a discussion about serious illness care and end of life care with. Whether you feel responsible or simply want to help, you have a natural desire to know what the other person wants so you can be guided by that knowledge. These conversations are often not easy, but they are important, and we have some suggestions as well as other resources to share with you.
A few helpful pointers:
Select an Appropriate Setting
Find a quiet, comfortable place that is free from distraction to hold a one-on-one discussion
Ask for Permission
People cope with serious illness in many ways, asking permission empowers them. Ways of asking permission could sound like this:
- I would like to ask about how you would like to be cared for in you got really sick. Is that OK?
- If you ever got sick (or since you are not feeling well), I would be afraid of not knowing the kind of care you would like. Could we talk about this now? I would feel better if we did.
Be Open to the Experience
Keep in mind that you have initiated this conversation because you care about the other person’s wellbeing. Be sure to allow the other person to set the pace.
If you can, maintain a warm and caring manner throughout the conversation by giving nonverbal feedback such as nodding or gentle touches
Ask Questions
Here are some examples questions you can use during the conversation:
- If you were diagnosed with a serious illness, what types of treatment would you prefer?
- Have you named someone to make decision on your behalf if you become unable to do so?
- If you had a limited amount of time to life, what would be most important to you?
- How can I best support you and your choices?
- Tell me more about that. (After the other person has expressed a wish you don’t understand or seems incomplete)
Be Gently Persistent
It is normal to encounter resistance the first time you bring up these issues. Don’t be surprised or discouraged, just plan to try again at another time.
When you talk again, chunk the topic down if necessary. In one conversation, determine who the person would like to speak for them for instance and in the next understand more about their wishes.
These are difficult conversations, don’t try to do it all at once.
Be a Good Listener
This is the most important suggestion we can make. Keep in mind this is a conversation, not a debate.
You may disagree with what the other person wants, but this conversation is about them, not you. Just listen and seek to understand.
After the Conversation Make Notes
These will be useful if you will be helping the other person complete any kind of written document, an advance directive for instance.
Know that You Are Doing a Good and Loving Thing
You are initiating this conversation because you care about the other person and want to do right by them. They may or may not welcome the conversation, depending upon how they understand and accept their own situation, and the conversation may or may not go well. No matter how it goes, or how many times you have to bring up the subject, know that you are doing a good and loving thing.
Get More Information
There are a number of other resources that speak in more detail about how to have these conversations. The Conversation Project is an excellent resource and had materials in Spanish as well as English. AARP also has good information about this and related topics.
