With the Patient

Many people find it difficult to talk about death, dying and their own illness. For some people this kind of discussion is most difficult with family.

You can try several strategies to help your father open up and talk. It’s possible that no matter what you try your dad may be unwilling to talk. This can be hard for you, and if it is, it may help to tell him so. Unless he knows, he may not realize that talking will help you and him.

First, it’s important to acknowledge your father’s illness and even ask questions about it and how he’s doing. If you say nothing it can be awkward for both of you. It’s possible that you both want to say something, but each is afraid that the other is uncomfortable with the subject. Your father may want to protect you, which may be why he isn’t talking about things, or he simply may be uncomfortable. If you make the first move your dad may feel more at ease. By inviting him to talk, you are letting him know that you are open to talking about dying, or whatever else is on his mind. If your father still is silent, it may the way he needs to deal with his illness at this point. If you make it clear, however, that you’re willing to talk, it’s likely to be a comfort and may make it easier for him to open up when he’s ready.

If he does start talking, the best suggestion is to be attentive. Watch and listen for clues that tell you what your dad wants to talk about, what makes him uncomfortable and what’s comfortable. Often people who are dying are afraid of pain and other symptoms at the end of life. As your dad talks, some fears may come up. If this happens you may want to contact a health care provider who can help explain his illness and what to expect.

It’s okay to ask your dad if there are things he wants to talk about. He may have certain memories or experiences he wants to share. If you’re not sure whether your father’s comfortable with the direction of conversation, or if you’re not sure what he means by some comment, just ask. The first discussion is often the hardest. It should get easier as you and your father continue to talk.

Talking about death and dying is difficult for many patients, families and health care providers. Death is not often talked about openly in society, so when faced with having to start that difficult discussion, many feel lost, worried and uncertain about how to begin. To complicate matters, all patients have their own coping and communication styles, which may vary depending on their relationships with particular people. Family members, too, may have different needs and communication styles. Some family members may want to talk about the patient’s values, beliefs and wishes (either to feel at peace with the relationship or to feel confident in making decisions that respect the patient’s wishes). Other family members may not be prepared to talk about a patient’s illness and impending loss (either out of fear or as a way of coping). Health care providers can greatly assist families by facilitating these difficult discussions. However, there is not any one strategy or resource that will work for all families.

When a family asks us to withhold the diagnosis or prognosis from the patient, we must balance the family’s wishes with the patient’s right to information. Doing so requires us to consider the impact of culture on a family. Some cultures dictate who in a family bears responsibility for decision making and communication. It’s important for us as health care providers to gain an understanding of how cultural values may affect a patient’s situation. Our role may not be as straightforward as honouring a patient’s “right” to know. Similarly, a family often has its own “culture,” or way of operating, and we need to acknowledge that in our communication. If we don’t, the family will likely be more resistant to engaging with us.

As health care professionals working in palliative and end-of-life care, we believe patients should direct their own care as much as possible. This involves sharing information with them and including them in decision making. Families are sometimes reluctant to have “the conversation” about their family member’s diagnosis because they think it will take away their loved one’s hope, and he or she will give up. However, we know that the risk of people feeling isolated outweighs this concern. We also know that a big part of coping is redefining hope as we go along. We feel that hope can always be present in some form. Hope for a cure changes to hope to live as long as possible, to hope to be pain free, to hope for a good day.

Another fear often expressed by families is that if we talk about something it will make it happen. For example, if we discuss a patient’s prognosis, the patient will become sad or worried. In reality, it is often family members who are afraid to talk because they are sad and worried themselves. By limiting the conversation, they feel they can protect the patient when, in fact, they may be protecting themselves from their own painful feelings. Our role is to gain an understanding of these feelings, and to gently help family members determine what they can and cannot talk about. It is also important to negotiate with them about how and when they want us to give health information to their ill family member.

Explain to families that patients are often aware they have a terminal prognosis, and if they can’t talk about it, they often feel frightened and isolated. Here is one way to start that conversation:

“I can understand why you don’t want to tell your mom about the severity of her illness. You want to protect her and prevent her from giving up hope. But imagine if the roles were reversed and you overheard your health care provider telling your mother that you were terminally ill. How would you feel? You may appreciate and understand your mother’s motivation to protect you, but you might feel angry or disappointed that she is excluding you. Being left out may limit your ability to participate in important conversations about your care or to do things you need to do before your life ends. You may also feel that others see you as incapable of handling the situation."

There is a distinction between the right to know information and the right to accept or decline information. When the appropriate time comes to discuss health information with the patient, one way to approach this communication is to ask:

“Some people want to know everything they can about their illness, such as results, prognosis, what to expect. Others don’t want to know very much at all, perhaps having their family more involved. How involved would you like to be regarding information and decisions about your illness?"

Be aware of the patient’s sense of his or her diagnosis and prognosis, and how he or she talks about the illness. Stating that the patient is near the end of life, terminally ill, or dying isn’t the best way to start a conversation unless the patient is already using these terms. If the patient has not shown a readiness to discuss being near the end of life, you might begin by observing that the patient has been quite ill, and that he or she has faced medical challenges that often prevent people from feeling like themselves. Suggest that it might be helpful to talk about what is important to him or her, particularly regarding matters that concern family and close friends. Questions you could ask include:

• “Are there particular things you feel need to be said to your loved ones?”
• “Are there instructions you would like to give your family at this time?”
  

If the patient responds affirmatively to such questions, explore further how this information might be shared.

Each family dynamic is unique. When disagreements arise between family members about whether the patient should be informed of his or her illness, we encourage families to be open and honest in communicating with each other and to acknowledge the condition of the patient. It is often helpful for the health care team to arrange a family meeting so that everyone can express his or her ideas, questions, and concerns, as well as share information in a non-threatening way.

A family meeting also offers a way for the health care team and family to reach agreement on a care plan. It reinforces the idea that everyone shares the same goal – the patient’s comfort – and builds consensus on how to reach that goal. A meeting is also an opportunity for the family and team to gain an understanding of and respect for different opinions and coping and communication styles. While coordinating such a meeting may seem difficult, having everyone present can save time and energy, and positively affect the patient’s care at the end of life.

Ultimately, our role as health care providers is not to “fix” anything within the family but to seek an understanding of their experiences, values and wishes. We provide the family with information and discuss possible courses of action. This means being honest about which of the family’s expectations we can reasonably meet and which we must negotiate alternative approaches for if we cannot.

Here are a variety of resources that focus on communication with patients and families:

• Communication with Patients and Families. A PowerPoint presentation for health care professionals about communication in palliative care.
• Family meetings in palliative care: Multidisciplinary clinical practice guidelines. An article that presents a framework for preparing, conducting and evaluating family meetings.
• What Do I Say. An article from the Topics section of our website that families may find helpful.
• Living With Limited Time: Exploring Feelings. An article from the Topics section of our website that families may find helpful.

References

Clayton JM, Butow PN, Tattersall MH. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer. 2005;103(9):1957-1964.
Available free online: http://onlinelibrary.wiley.com/doi/10.1002/cncr.21010/full

Gueguen JA, Bylund CL, Brown RF, Levin TT, Kissane DW. Conducting family meetings in palliative care:  themes, techniques, and preliminary evaluation of a communication skills module. Palliat Support Care. 2009;7(2):171-179.

King DA, Quill T. Working with families in palliative care: one size does not fit all. J Palliat Care Med. 2006;9(3):704-715.

Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J of Pain & Symptom Manage. 2007;34(1):81-93.

Reynolds K. Requests for non-disclosure of poor prognoses to patients. End of Life Journal. 2013;3(4):1-7.

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.