Communication
When caring for patients with advanced disease, we struggle with knowing how to initiate conversations related to palliative end-of-life care. Can you offer suggestions?

Many professionals struggle with initiating conversations about end-of-life care. Some common barriers include finding the right moment, choosing words that will open the door, and being informative and empowering but not threatening to the person’s sense of hope.

In our experience, people who are living with the diagnosis of a terminal condition have had thoughts about dying, even if these are brief, fleeting fears they quickly suppress. It is difficult to imagine being in such a position and not having concerns about the end of life.

A helpful way to initiate a conversation about end of life is to begin with a statement that normalizes these concerns, such as:

"Many people who are in situations such as yours have thoughts or questions about what to expect as their illness progresses, such as how they might feel or what can be done for them. Are these things you have thought about? Would you like to talk about them?"

Alternatively, you could start by saying:

"When people are in situations like yours, even when they are hoping that what’s being done will be helpful, and may turn things around, they often have times when their mind turns to scary ‘what-if?’ thoughts. Is this something you’ve thought about? Would you like to talk about it?"

Normalizing the experience can lessen a patient’s feeling that he or she is the only person who has such concerns. However, it is important to seek the patient’s permission to expand the discussion, even if he or she says, "Yes, I’ve thought about that." Sometimes people will acknowledge having thoughts about the end of life, but will decline to explore them further.

Another approach to initiating the conversation is by framing it as an aspect of the patient’s care plan that should be discussed. Start with positive information, such as what is being done for the patient and what further options are available; then address the "what if" issues. For example, with a cancer patient, you might say:

"As you know, we are using a new chemotherapy protocol, and we are hopeful that we’ll see some improvement for you. There may be other options we can think about if needed. However, I’d like to talk with you about how you would like us to help you and work with you if things don’t improve as we had hoped. Often people have thought about what kind of approach to care they would want if their illness progresses, in spite of treatments, and it seems they are losing ground. Would you like to talk about that?”

We have found the approaches described above are usually an effective starting point. Nonetheless, there are people who simply will not talk about end-of-life issues, which can be frustrating for the health care team and upsetting for the family. In our experience, this reluctance to talk about dying doesn’t mean they don’t understand that they’re dying, they just don’t want to talk about it. It would be unusual that someone with advanced disease, who is relentlessly losing weight, becoming weaker, and experiencing pain and other symptoms, would not know that he or she is dying. In these cases, it is usually not necessary for us to keep trying to make them understand and verbalize their acknowledgement. Rather, we should try to deliver the best care we can within the constraints that the patient and family define. It is important to try to understand what is behind the reluctance. It could be that the whole situation is very frightening and the patient can’t “go there;” or, by not talking or minimizing what is happening, the patient feels protected from the inevitable outcome of the illness. Either way, a more helpful approach is to work on relationship building, establishing trust and gaining an understanding of “where the person is at.” You may need to focus information sharing on family members (with the patient’s permission), so they will have a realistic picture of what to expect as the illness progresses.

You might find that Dr. Robert Buckman’s book, I Don’t Know What to Say, has valuable insights into communication challenges around death and dying. It is primarily intended for friends and family, but it is a good reference for health care providers as well.

References

Barclay JS, Blackhall LJ, Tulsky JA. Communication strategies and cultural issues in the delivery of bad news. J of Pall Med. 2007;10(4):958-977.

Clayton JM, Hancock K, Parker S, Butow PN, Walder S, Carrick S, et al. Sustaining hope when communicating with terminally ill patients and their families: A systemic review. Psycho-Oncology. 2008;17:641-659.

Evans WG, Tulsky JA, Back AL, Arnold RM. Communication at times of transitions: how to help patients cope with loss and re-define hope. The Cancer Journal. 2006;12(5):417-424.